Brain bleeds in preemies

Bleeding in the brain, known as intraventricular hemorrhage (IVH), occurs in some premature babies. A baby born before about 32 weeks of pregnancy is at highest risk. The bleeds usually occur in the first 3 days of life and generally are diagnosed with an ultrasound. Fortunately, a preemie’s brain, which is still developing, has great stamina. Most brain bleeds are mild and resolve themselves with no or few lasting problems.

Generally speaking, the younger, smaller and sicker a baby is at birth, the more likely he is to have an IVH. A baby whose birth weight is less than 1,000 grams has roughly a 35% chance of having an IVH (20% of having a serious one), while a baby born between 1,000 and 1,500 grams has only about a 7% chance of a serious IVH. After 30 weeks of gestation, the risk of developing a serious IVH drops to less than 1%.

Intraventricular hemorrhages are given a grade (1 to 4) according to their location and size, and the right and left sides of the brain are graded separately. Grades 1 and 2 are mild, generally resolve themselves and have no long-term problems associated with them.

More severe, serious bleeds (grades 3 and 4) can affect, though not always, the substance of the brain or cause the fluid-filled structures (ventricles) in the brain to expand rapidly. These severe bleeds can cause increased pressure on the brain that can lead to brain damage bringing about complications such as cerebral palsy and learning and behavioral problems. When fluid persists in the ventricles, neurosurgeons may need to insert a tube (shunt) into the brain to drain the fluid and reduce the risk of brain damage.

The long-term outcome for a premature baby who suffers an IVH depends on many variables: the grade of the bleed, the degree of injury caused by lack of blood and oxygen flowing to the brain around the time of the bleed, mechanical interventions required to help the baby (such as the use of a ventilator), and any complications the baby has (such as infection or hydrocephalus). Head ultrasounds and MRIs will be used to closely monitor changes over several weeks. Test results will help doctors predict what parents may see once their baby comes home.

It’s essential to note that no two babies are alike and each baby has his own path to walk. What’s important is that the parents of each baby provide a nurturing and stimulating environment in the early years to help him develop to his full potential.

Learn more about brain bleeds in premature babies, including what to expect when you leave the hospital, and where to go for support.

If you had a baby with a brain bleed, please feel free to share a little of your story with us.

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130 Responses to “Brain bleeds in preemies”

  1. Kim Says:

    My son was born at 26 weeks and had a grade 1 IVH. However on his head ultrasound and EEG there was bad news. There was bad definition between grey and white matter and it looked hazy. Which means there was a brain injury. He also had cysts in his brain. NICU dr’s told me the outlook was not good…… Almost 5 years later, I have a typical boy. The only “issue” he’s really had to deal with was a severe speech delay. But he now speaks age appropriate and is not longer recieving any services at all. He’s in mainstreamed preschool and will be starting mainstreamed kindergarten in septemeber. I still have the report from the ultrasound/EGG results and it still makes me sick to my stomach to read. But, it also makes me so incredibly thankful that my son can be so “typical” after an experience like that. Preemie’s are resilant!!

  2. Lindsay Says:

    Kim – It’s wonderful to know that your son has managed to do so well and is your “typical” boy today. You are so right when you say that preemies are resilient. That’s why parents should never give up or expect the worst when given bad news. You just never know what will happen. Thank you so much for sharing your story and encouraging news.

  3. Tim Says:

    my grandson was born 2 days ago, 1.7 lbs at 27 weeks. He has grade 1 bleeding, all else is normal. Kim, thanks so much for the information. This is news grandfathers need also!!

  4. Jessica Says:

    i am recovering from an emergency c section that was done 2 days ago, our daughter born at 25 weeks and 5 days, there was no notice, and no reason for early delivery as the doctors say, i just went into labour and she was ready to come she was perfectly healthy at delivery however this morning we got news from the nico unit that she has a grade 3 brain bleed, they told us that all we can do is wait and that in the morning they will redo the ultrasound and hopefully it will decrease we are praying. she is 890grams but a real active little thing. everyone at the nico is in love with her and call her a diva. hoping someone else may have had a similar story that i can share this with.
    a very distraught mommy

  5. makiahsmom Says:

    My daughter was born at 23 weeks and 4 days on September 13th 2012. She was diagnosed with a bilateral grade 3 and 4 hemmorage. She has hydrocephalus as a complication and had a reservoir placed. She also had NEC, which required surgury on her intestine due to perforation. She also had to have a PDA ligation to close the hole in her heart, this is all before one month of age. My darling Makiah is a true fighter! Today, at one week shy of 2 months, they started feeding.(not bottle feeding) I have never experienced or heard of all the complications preemies endure until now. Its a very scary experience. All I do is read books and browse the net for info on the condition. She’s doing well so far without complications from her surgeries. I’m praying for the best as only time will tell. Any moms out there with any success stories?

  6. Lindsay Says:

    Our Share Your Story site ( is an online community for parents of preemies what allows everyong to ask questions, share knowledge and stories, lend support and more. I encourage you to visit it and post something. You will hear from someone very soon.
    Wishing all of you the very best – Lindsay

  7. anna vannote Says:

    My grandson was born 2 days ago at 23 weeks 5 days. My daughter was given the shot the week before to help his lungs due to preterm labor. He is on a c-pap and did not have to be on a ventilator. He does not need surgery to close the hole in his heart as it closed on its own. I am amazed how even the tiniest babies are so strong.
    I know that there may be bumps along the way but at least he has a fighting chance.
    We have been praying and our town has really pitched in to help. The hospital is 300 miles away and have received donations for gas, food, lodging.
    We count every little baby step he takes to coming home someday.
    Its will be hard for her to leave him to come home but he is in good hands.

  8. anna vannote Says:

    His name is Cato and was born at 1lb 4oz, 11 1/2 inches long.

  9. Shama Says:

    I am newly mom of twin boys they were born at 27 weeks only each 1 killo ! baby A have bleeding with grade 3 and baby B grade 1, and am scared of all of this as all moms am sure. today I have heard from the doctor that baby A last X-rays showed an increase in this area of the brain due to an clotting thats keeping the spinal cord fluids circulation from proceeding!!!

    I tried to hold on so I can understand from the doctor as much as I can so I go home and do my searching…

    he told me that he need a tube to be inserted into the brain for suction and it will stay there for a week or more it depend and all of this might cause an infection which 30% ~40% of preemies get!! this is a high statistics!! and having an infection during the procedure will lead to stop the surgery for a while until the infection is off the system and antibiotics are given for min 2 weeks…

    BUT I have faith that these little precious boys will survive it all with the help of god

  10. Lindsay Says:

    Anna and Shama – We wish your little guys all the best. If you would like to have our kit for NICU families that includes a BABY JOURNAL designed specifically for babies in the NICU; a PARENT BOOKLET that discusses common feelings parents may experience and how they can bond with their baby during the NICU stay; a NICU GUIDE and glossary that defines common terms used in the NICU; as well as a book to prepare you for the transition HOME, please send us and email requesting it to Be sure to include your full name and mailing address and we’ll gladly send it to you.

    Hang in there – Lindsay

  11. MRB1 Says:

    Hi All,

    How long usually it takes for the blood to go away ,like for grade 2 and 3 ( approximately what should we expect??months,days,weeks?)
    Any idea?


  12. Lindsay Says:

    Hi MRB1 – Unfortunately, there isn’t an answer for you. So much depends on the individual baby, his gestational age at birth, whether he needs to be put on a ventilator, etc. Some may clear up in a week or two, others may take longer. Your baby’s health care team should be able to give you a bit more information and an estimate. For Mom and Dad, it’s often a matter of trying to find patience and having faith that he will grow out of it eventually. I know that’s not easy.

    Try connecting with others on our Share Your Story site ( to see what their experiences were like. You should find some great support there.

    Best wishes to you and your little one – Lindsay

  13. Petra Says:

    Hi, my daughter (6 moths old) suffer from bilateral IVH grade 4 at 2 moths of her age. She has severe hydrocephalus as result of this bleed. She needed shunt and already had one shunt revision. We spent 5 months in hospital. She has not problems with breathing and bottle feeding but she is very delayed in her motor skills and does not hold her head yet, does not cry, probably is blind (not sure yet) and is very sleepy all day. Is there anyone who has similar problems? I still hope for the best but I can see no progress.

  14. Lindsay Says:

    Hi Petra – I’m sorry to hear about your daughter’s struggles and sincerely hope you see her improve significantly in the months ahead.

    I think you should be able to connect with other parents facing similar challenges through out Share community. ( If you tell your story there, people will reply to you.

    Early intervention services ( may help her catch up or get on the right track. This web site is loaded with excellent information and can direct you to contact information for services for your baby in your area. Be sure to click through all the different sections of the site.

    I hope this will be helpful and wish you and you daughter all the best. — Lindsay

  15. algeretta Says:

    Petra, my daughter has the same diagnosis. Grade 4 bilteral bleed, hydrocephalus which required a reservoir (will be getting a vp shunt soon). She is three months old today and has not started po feeding yet but sucks a pacifier well. Shes been doing pretty good so far but im a little nervous about what hanges can take place in the future. Im hoping and praying any complications will be minor. I need support and other parents stories as i ama very new to this. I hope your daughter gets well. Any feedback from parents who have been in this situation please give feedback, thanks.

  16. Lindsay Says:

    Hi Alegretta – Thanks for sharing your daughter’s struggles with us. As I told Petra, you probably can find a lot of support from other parents on our Share Your Story site:

    I hope you find the support you need. Sincere best wishes for you all. — Lindsay

  17. millie Says:

    my daughter ahmyra is a twin and she is suffering from grade 4 brain hemmorage she only 2lbs 4 ocs and she is off and on on her venlinator…..can any one please give me some advice on what to hope on her future because her docs is jus giving me all bad news about now…

  18. Lindsay Says:

    Millie, I’m so sorry to hear about Ahmyra’s struggles. Each child is different and reacts differently to brain bleeds. Her doctors are the best ones to answer specific questions about her case, but you will find lots of support from other parents who have been through what you are experiencing on our Share Your Story website: It’s an excellent source of support and we strongly recommend you visit the site today. Best wishes for Ahmyra’s continued improvement.

  19. Brynn Says:

    Granddaughter born at 27 weeks … Emergency c section…
    Has 2 bleeds Grade 3 …we are so concerned… Son and his wife have been told worst case… But we are prayerful and hopeful…please give us info and hope…

  20. Lindsay Says:

    Brynn, I’m sure all of you are anxious about your granddaughter’s health and it’s difficult for you to just “wait and see.” Unfortunately, there is no way to predict what consequences will stem from her brain bleed. As mentioned above, every child is different and her reaction to her situation could be significantly different from another baby’s reaction to what seems to be a similar situation.

    Many family members have found it helpful to keep a pad of paper handy and write down their questions as they come to mind. Then take the questions to the hospital and ask the docs and nurses when you see them. This way you won’t forget to ask something that has been on your mind. (Under stress, we all forget things.)

    Don’t forget to visit our Share Your Story site (see link in comment above). You can get support and helpful suggestions from other parents who have been down this path.

    Best wishes to your little granddaughter and your entire family,

  21. Sarah Says:


    When is grade 1 IVH expected to resolve? can it increase to grade 2 or 3?

  22. Lindsay Says:

    Hi Sarah – Here’s a good and encouraging answer to your question.

    According to the book “Preemies: The Essential Guide for Parents of Premature Babies” (2nd edition, 2010), “If your baby had only a Grade 1 [IVH], you really don’t have to worry. There’s almost no risk of short-term complications, and the odds of your baby’s growing up normal are just as high as those of preemies without bleeds… In a week or two, doctors will want to check whether the hemorrhage has gotten bigger, because a few do enlarge. But even if this happens, there’s only a small risk that your baby’s prognosis will change. So take heart and don’t focus on the next head ultrasound. Most likely, he’ll have just one or two more, and you’ll soon forget all about [IVH]s.”

  23. Ashley Says:

    My son was born april 29, 2010. He was born at 28 weeks, he was born vagianly and they took him right away. The next day the doctor came in a told me that he wish he didnt have bad news to tell me but that my baby had a grade 4 bleed on right right side and a grade 3 on his left. They kept him for 2 months. Hes now going to be 3 in april and when he was born they thought the wrost that he wouldnt walk or talk or anything. My son has some stiffness in his left side and dosnt like to use his left hand but hes walking and talking, he running, he gos to threapy and they have helped him alot. His doctors are amazed with him. He has to go get cat scans every 4 to 5 months to make sure everythings okay but I wanted to tell his story because there is hope. I pray everyday for him too keep him safe and healthy and happy and he does something new everyday. He may have been delayed on some stuff, still is alittle, but I am just happy he is doing these things. I hope that every thing is going well for your granddaughter. There is hope though.

  24. Sharon Says:

    Hello Everyone this is all a hard process My son was born on Feb. 5th 2013 at 27 weeks and 4 days. He does suffer a brain bleed 3 and had to have a reservoir put in. He had gained weight in the last month up to 3lbs 14 oz and they will start introducing the bottle in the next week or so. Please other moms keep you faith these babies are fighters.

  25. Marilyn Says:

    My grandson, Leo, was born @ 27 weeks, 5 days. My daughter had severe pre-eclampsia and HELP syndrome. I am so thankful they are both alive. Today is his 1 week b-day. We were told today that he has a Grade 4 bleed, but it is resolving. I assume this is good, but I fear the long term outcome may not be. The stories the others have shared have given me some hope for my beautiful grandson, thank you.

  26. Lindsay Says:

    Happy birthday little Leo! We’re so glad you and your mom came through such a frightening ordeal. Best wishes to the whole family.

  27. Sarah Says:

    Our twin daughters were born at 24 weeks. They weighed 1 lb 8 oz and 1 lb 12 oz. One of them only lived for 5 days. The other twin survived. After a grade 3 and 4 brain bleed, shunt surgery and a long 4 months in the hospital we were blessed to bring her home. That was 11 years ago! She hasn’t had any surgeries since. She was diagnosed with Cerebral palsy/developmental delay at a very young age. She was late reaching all the milestones but eventually was able to sit, roll over, crawl (like a frog :) and now as she is older walks occasionally with a walker. Verbally and with speech you would never know there was ever anything wrong with her. Yes, she cannot walk far but that hasn’t stopped her. She has made many friends and is the funniest kid you have ever met. She has a zest for life that not many people have. When they sent us home when she was 4 months they just said don’t expect much, just give her a good life. I wish I would have known then what I know now. The road to her 11 years of life has not been as depressing and sad as they made us feel. If you are going through this please know you are not alone. Many of us have spent sleepless nights awake in the NICU wondering if our baby would make it till tomorrow. God never gives you more than you can handle. Everything will turn out okay. Have hope and a lot of faith!!

  28. Lindsay Says:

    Sarah, thank you for sharing your story with us!

  29. Jessica Mebs Says:

    MY name Is jessica. My identical twin girls are now 6 mths old. Both babies suffer from brain bleeds. One with a level four and one with a 2/3 bleed. I had an emergency c-sectioin at 28 1/2 weeks. My girls went through surgerys about everything you could name they had done to them. My one daughter was in the hospital for around 3 mths. our other daughter was in for 5 mths. Alot of the problems were caused by twin to twin tranfustion that i was diganosed with during my time being pregant. Just somthing I would like to tell all of you moms out there that are going through this. It seems like there is nothing you can do. You feel helpless. Your natural instinct is to comfort your baby. And that is not really an option when in the NICU. Just have hope. Prey and keep your head up. Things are tough. There will be good and bad days. Its like a roller coster. This is one of the most difficult things I have ever experienced. I just remember that the dr’s had told us alot of diffrent things that our children may come across while growing up. They said they may not even smile or laugh. Me and my fiance were given an optioin to stop treatment on our one daughter. Just keept calling her a baby. Its just a baby!! But we live with hope. I never prayed a day in my life until i had my two little mericles. Now they are proving everyone wrong. They are advanced in there devlopment and dont need any further help. Babies that were born at 1 lb 11 oz and 2 lb 4 ounces. With severe bleeds are doing well. Just keep ur head up and know that there is always a higher power to help you through your journey through life. Prey, have faith , and never underestimate them. Thell prove you wrong

  30. Ginni Says:

    Hi, My child was born in 27 weeks, with IVH and other complications having to spend 3 months in NICU. He has delayed milestones, but due to IVH his vision is compromised. He is 7 months old and we are desperately trying to look for a cur or treatment that will improve his vision. please suggest / help … we are hopeful things will be fine.

  31. Lindsay Says:

    Ginni – we’re so sorry your son is struggling. Be sure to read our series of posts on Delays & Disabilities: Getting help for your child. (At the top of the main page of this blog, select “Help for your child” in the “Categories” section on the right had side of the screen.) The series started in January and has continued every Wednesday with lots of helpful information.

    Also, check in with other parents at our Share Your Story site ( for their input. It’s amazing what different therapies can do. Best wishes to you both.

  32. Kshitij Says:

    My 12 weeks old son has been suffering for Sagittal vein thrombosis and hemorrhage??? He is recognizing his mother, smiling and taking milk. I am so confuse…….what is going on?

  33. Lindsay Says:

    Kshitij – I’m so sorry to hear that your son has these issues. Unfortunately, we are unable to say what may be happening. His health care providers who are monitoring and treating him are in the best position to provide you with answers. You may find it helpful to keep a list of your questions and then review the list with your son’s doctors. This is a difficult and confusing time and by keeping a list you will not forget to ask about specific things that puzzle you. It may be helpful to write down the answers, too, so that you can review them later.
    Best wishes – Lindsay

  34. Lisa Says:

    Hello all…My son was born at 30weeks and suffered a grade 3 IVH on one side resulting in Hydrocephlas. He has not needing shunting and only needed 3 lumbar punctures to drain fluid whilst in hospital. Of course we have been told possible outcomes, but so far so good. He is doing every he should be doing for his corrected age of three months, the Drs and Physio are really happy with his progress so far and we pray that he stays on this great path. But like all premmie mums you google constantly for positive outcomes. Though its still only early days my son rolls has good head control, swats his toys is starting to grab, loves to get in his feet and gabbles, smiles, looks you straight in the eye, if we didn’t know his medical history I would suspect any problems! After all the googling, questions to Drs etc the biggest thing is love and nurture and as much stimulation as possible! Good luck to everyone and their little premmie troopers!!!

  35. Janice Says:

    Hi! My baby was born at 27 weeks almost a year ago. I was in preterm labor and in the hospital from 16 weeks. My daughter had pulmonary hemorrhage, BPD, persistent PDA and Grade1/2 bilateral bleed. She stayed in the hospital for almost 3 months. She is a bit delayed (even for her corrected age) and is under going therapy but she is a very active and happy baby. That was the most difficult experience I have ever had in my life but we survived it. It may be very hard to find hope when you feel that everything is going so wrong but things do get better. Good luck to everyone! All the best!

  36. Jackie Says:

    My baby girl Lucy was born at 27 weeks. She is now ten days old and the dr just told me she has a grade 4 brain bleed on one side and a grade one on the other…. All the doc could tell me was that they will do another scan in a week to watch it but that she could suffer developmentally… Its so scary

  37. Lindsay Says:

    Jackie – I’m so sorry to hear of Lucy’s situation but glad to know the doc is watching it closely. Yes, it is scary. You might find it helpful to chat with others about it on our Share Your Story site. There are wonderful people on the site who have been through what you are experiencing and can offer you their support.

  38. Christa Says:

    My daughter was born at 27 1/2 weeks via an emergency c-section. She weighed 1 lb 15 oz 12 inches on 12/31/10. I was given the steroid shots 2 weeks prior. The first evening/day things looked “good” then on Subday morning she needed a transfusion from a bleed somewhere. It took another day to verify it was a Grade 4 bleed which then led to multiple problems. Gabriella was not living rather suffering due to the amount of pain meds & eventually having to keep her sedate. We decided on day 5 to take her off of life support. We were able to hold her & have many pictures & now have a forever guardian angel. I truly wish all of you much happiness with your babies.

  39. Jessica Says:

    My son was born at 40 weeks. When he was two days old he suffered from a grade 4 brain bleed. We were in the hospital for 22 days. It was the hardest thing I have ever been through. I felt very helpless. It was very much a waiting game. We still are playing the waiting game. The docs are not able to tell what damage has been done. I’ve been told to monitor him. We are in a group called Early Interventions. They come by and check on his progress. My son is now 3 months old. So far he seams to be on track with everything. He has came a long way.

  40. Lindsay Says:

    Christa, I’m so sorry to hear of Gabriella’s passing. You may want to share your story with others on our site for NICU families. You’ll find great support there.

    Jessica, we send best wishes to you and your son and hope that he continues to improve. You, too, might like to connect with other families on our Share site.

  41. Sally Says:

    Hello Fellow Mommy:

    This is the hardest thing I have had to endure in my life!!! My Samirah is 18 days old; she has a grade 3 brain bleed. She also has picked up a bacterial infection from being I the NICU, and required a spinal tap – I nearly lost my mind ladies, but I composed myself, because she needs me to be strong for her.
    The unknown is very bothersome, but having faith in a higher power is helping me face it… God Bless You All, and remember when your in the NICU pray for all the babies, cause I’m sure there is another mommy in there praying for your baby too…

  42. tasha Says:

    Hi, my son was born at24 weeks weighing 1lb 10oz. I had to have an emergency c- section because my water was leaking. He had level 4 brain bleed. At 25 weeks gestational age he was scooting across the crib and doing thing a preemie don’t even know how to do. He is now 2 months old weighing 4lbs 15 oz. He is due to come home in 2 weeks. The nurses said they cant believe how smart he is already. the physical therapist comes to see him every week and said he is doing very well… Now we have to wait on him to start sucking the bottle.. Hey he even follows my finger and grabs for it… There is hope. its all in Gods hands. The doctor told me it was only 30 percent chance he was gonna make it… Now he is a healthy beautiful baby boy. That is not to say that he Is not gonna be a special needs child… But to be honest I don’t care I will love my son and do whatever I can to make him happy because these premature babies are miracles and God will never put too much on you where you cant handle. God bless all the new parents and never give up!!! you gotta stay strong for the babies…

  43. Lindsay Says:

    Sally and Tasha, you are right – we all need to be strong for the babies.

    Sally, I hope little Samirah is doing better, that her infection is gone and that she is growing stronger every day.

    Tasha, it’s so good to hear your positive experience. You must be happy to see your NICU experience nearing an end.

    Best wishes to both of you and your little ones.

  44. Sunshine Says:

    My son was born at 27 weeks and had a grade 3 brain bleed with hydrocephalus. It did resolve on its own. He is now 5 and just started preschool last month. He has always had delays. Didn’t sit until 13 months, crawled at 15 months, and walked at 22 months. Same with potty training. He just potty trained shortly before turning 5. Most mornings he wakes up dry but does wake up wet sometimes. I am having a little trouble with his preschool though. I’ve noticed when he comes home some days that there is a little poop in his underwear. He tells me that his teacher doesn’t help him wipe. His teacher emailed me this week and stated that she would like me to work on his independence such as wiping himself and taking his leg braces off at nap time. I’ve requested a meeting with his therapists and teacher to resolve this because I don’t think she understands the complications he has from his brain bleed.

  45. Lindsay Says:

    Sunshine – It’s good that you have scheduled a meeting with everyone. This way you can come up with a plan that’s best for him and his growth and everyone will be on board. Best wishes.

  46. Khadija Says:

    Hello. My angel boy was born on August 30, 2013 at 30 weeks and 4 days. I just found out yesterday that he has grade 3 IVH. The doctors want to wait and monitor till next week, if it’s getting worse or getting resolved on it’s own. They said, when the ultrasound was done, they did notice that the ventricles had thicken up than normal.
    If it gets worse, he will have to be admitted in Sick kids hospital to perform ventriculoperitoneal shunt.
    He seems to have regular movements, and he cries if he’s moved a lot, but the only thing that scared me was what he has been doing with his eyes since yesterday, he keeps on moving them up and freaking me out, but doctors are saying it’s because he doesnt have control over his eyes yet.
    This is my first born, and the love of my life. This is so tough, but I am really trying to keep faith in God that he will take care of him. I feel for all you ladies, I am glad we can share our stories and comfort each other.
    please keep my little Esa in prayer.

  47. Lindsay Says:

    Khadija – Yes, our thoughts are with you and your little son, Esa. Please visit the Share Your Story site to connect with other parents. They are very supportive and know what you are going through. Wishing you all the best – Lindsay

  48. LaShay Says:

    My baby boy was born at 26 weeks @ 2lbs 2Oz. My boy was diagnosed with Hemophilus influenza which caused a grade 3 bilateral bleed. My boy is now five months the bleed resolved on it’s own. I was terrified because I had never experienced anything like this from my other children. But he is is doing great and after 3 months in the NICU he is home and a very happy baby pda closed on it’s own eyes were great he’s still little but my boy is a fighter good luck prayer changed things

  49. Lindsay Says:

    LaShay – We’re so glad to hear that your son is home and doing well. Yes, he sounds like a tough little fighter – excellent news! Thanks for sharing his story.

  50. Terry Says:

    My daughter was born at 30 weeks and had a grade 1 bleed and infarctions. A follow up CT scan showed that the bleed was resolved but that there was extensive porencephaly on her brain and severe damage. The paediatrician was stunned as she showed no clinical signs. We saw a paed neurologist today and he looked at the scan and told us that she would have severe Cerebral Palsy and would not be able to focus her eyes or see as the occipital lobe is all but gone. However , she is 12 weeks ( 2 weeks adjusted) she can focus on objects, track an object, make eye contact and even hold her head when sitting and push herself onto her forearms when on her tummy.. I maintain that although the brain has been physically damaged – i saw the CT scan and it is terrifying – she seems to be absolutely normal and now we just wait to see if she hits the milestones .. she is already ahead with regards head stability. Thank you Kim for sharing your story, it gives me hope ! The doctor thinks i am a mom in denial but i spend 24 hours with my kid and he hardly even examined her but only looked at the scan

  51. Marla Morabia Says:

    Hi to all the couragious families of special needs children…i am the proud grandmother of twin girls who were born at 26 weeks …at first everything seemed fine seemedwith both the girls sara and miriam they were in the nicu recieving cpap ..thre weeks into their treatment miriams pic line site had a bulls eye arou nd it …i knew it was getting infected …well Miriam had sepsis she was so sick…due to her illness she suffered a pvl and miriam is 4 she has cp on the right arm and a drop foot she has vision loss in both eyes and hearing loss in the right ear sensory and feeding issues ..most of her doctos say she wont talk since the damage is on the left side of the brain. She recently started saying a few words heart is heavy with so many concerns..will she potty train. ? Will she need a life plan..will she be able to tell us whats bothering her …she is such a happy child she lights up my life…if anyone has a child with similar deficit s it would be nice to know how they are doing…i no each child is different …im hoping for the best ..i would love to hear ur story if u want to share

  52. Marla Morabia Says:

    Oh i forgot to mention that miriam has been walking since she was two

  53. Lillys MawMaw Says:

    My granddaughter was born at 23 weeks and 4 days. Her name is Lillian (Lilly). At birth she weighed 1 pound 2.2 ounces and was 11.2 inches long. Lilly is suffering from a Grade 3 & 4 brain bleed (IVH). She spent 5 months and 4 days in the NICU. Lilly also (ROP) retinopathy of prematurity, she has had 2 eye surgeries on both eyes , the left eye is doing well but the right eye might have to have more surgeries done on it. Lilly started drinking a bottle (breast milk) at 2 1\2 months old, but then came to find out she was aspirating. So, she is feed primarily threw a G-Tube. Today Lilly is 9 months old and the doctors has taken her off most of her meds and is only on her oxygen at bed time which they have wen down on the amount it is now at 1\4 liter. Actually over all Lilly is doing quite well concerning all the set backs.. and man has it been one roller coaster ride after the other….

  54. Miracle Says:

    We also have premie too who is now 11 mths old and he is doing superb that nobody can tell he was once born as premie at 27 weeks 5 days with 2 lbs12oz. He also had IVH grade 2-3, luckily it was all resolve when he was discharge from NICU. He actually did so well so that Drs. discharge him before his full term. He is doing so well that he cross all his border and we are so gradefull for the NICU staff and obviously for the god whose been up there helping him a lot. My colleagues calling him as miracle boy. So keep faith and pray god everything will be fine when the time comes.

  55. Renee Says:

    My daughter was born at 26 weeks weighing 1lb 12 oz. She was in the NICU for 3 months and was discharged home on her original due date. During her hospitalization she had 2 major complications (brain bleed and NEC). Since she required oxygen for an extended period thru the CPAP, she developed a brain bleed grade 2 on the right side of her brain. We were devastated, not knowing what effects this would have on her. We were only told that the effects would gradually appear as she begans to develop. They said it could be as simple as needing glasses or as severe as paralysis. At about 6 months I noticed that one side of her body (left arm and leg) seemed weaker than her right side. After taking her to several Drs. they said she had left side hemiparesis due to the bleed she had. She didn’t walk until she was 18 months. Once she started walking we began intense therapy 3 days a week. They determined that her arm was more affected than her leg. She wore a brace on her leg to keep it extended because the heel of her foot wasn’t touching the ground. As far as her arm it was markedly shorter than the right arm. Her muscles and tendons were so tight that she could not get full range of motion. After years of physical, occupatioal and speech therapy, my daughter is now 20 years old and in her second year if college. She has always struggled in math because the bleed affected the cognitive reasoning part of her brain. She has left side hemiparesis

  56. Says:

    Hi, my baby girl was born at 24 weeks she is now 9 days old. I just left the hospital crying, the doctors let me know that she has a grade 3 brain bleed. This is my first child, and I feel like I’m lost to feel this overwhelmed rush of love for my daughter to feeling pain, helpless, and scared of the worst that can happen. Your stories have given me a different look into this situation, thank you so much for giving me hope, please send out prayers for my daughter Meztli.

    thank you!

  57. Lis Says:

    Hi, my baby is full term baby , 37 weeks and birth weight was 3,83kg.
    Was born 1 October 2013.
    Based on USG he has ivh grade 2 , in NICU and doctor put a stunt into his brain to drain fluid.i don’t know for how long to get rid of the fluid.
    Doctor will do the MRI and I just hope he will turn out fine.
    My prayers and thoughts for moms ( parents ) who have a similar situation like me.
    God bless us and our little one(s)

  58. KaysMommy Says:

    My daughter was diagnosed with grade 4 bleeds on both sides. Am I worried? I was at first, but who wouldn’t be that’s my baby, she’s my everything. Today I am worry free because I trust god to break this chain, I put my full faith in god! He is the only one who can determine who my daughter will be in the future. Pray! Pray! Pray! Fast! Worship god and watch how great he is! God is amazing rather you know it or not! I look at this as a test. Will I give up? Never! Should you? Never! Nobody said it was easy I cried for 3 days straight and I was so depressed. And I said devil, you will not win! God is my lord and saver! Watch him show up and show out! Lets praise him mommys! Let’s not give up on our children, they need us. Let this be your last day crying, leave it up to god! I promise! ! I hope I helped! Give you guys
    our amazing update to prove he is real! All you have to do is call on him!

  59. lorna Says:

    morning to all
    our little girl was born at 33 weeks 6 days, she wasn’t very good when she was born she wasn’t breathing it took them 8 minutes to revive her.
    we then got told that she had strep b, meningitis, two holes in the heart and two intracranial haemorrhages on the brain.
    we then got told she would need to have a Amaya reservoir done so at 4 weeks of age she had this done.
    every other day she has to have it tapped but they now have to decide weather they should put a shunt in.
    my little girl was really bad and they didn’t think she would make it but she is home with us now she came home just before xmas.
    hope all goes well with your little ones it really does show that they are all strong all they need are there parents love.

  60. Lindsay Says:

    How nice to hear that you little girl came home. What a wonderful Christmas present! We wish her well and all of you a happy New Year.

  61. Chantal Says:

    My boy was born 24 weeks 6 days but was small for his age at just 1 pound 2 ounces. He had a grade 2 bleed which seems to be resolving its self but have now just been given the news his brain growth has slowed down. It hasn’t stopped but just slowed down. The doctors don’t know why and have advised us if it doesn’t start to grow in next 3 weeks we would have to look at switching off his support. I can’t find anyone whose been in this situation or any information on this it’s so hard

  62. Lindsay Says:

    Chantal, I’m so sorry to hear about your son. I suggest you go to our online community for parents of preemies called Share Your Story. You can connect with other parents who may have had a similar situation and can hear their stories and get their advice. Sincere best wishes.

  63. KaysMommy Says:

    Although things may seem bad and just going in the wrong direction just know there is hope! All you have to do is pray and keep faith in god! I promise everything will fall in place! He’s came through for me and my baby and is still blessing us! All you have to do is praise him! I hope all Is well ladies but PLEASE pray and see how amazing he is! :-)

  64. ashley Says:

    How are ur babies doing now? I had my little girl last May. She was 27 weeks and 2 days. 2lbs 4oz. She has bilateral ivh 3 on the left and 4 on the right recently dx with cp. Just wonder how other babies are doing…

  65. Jenny Says:

    I went into labour at 30 weeks, the doctor stop my labour and put me on bedrest. Everything seemed to be goin ok and then I went back into labour at 32weeks stayed in the hospital 2 days and the doctor finally came around and said there is no stopping it! They broke my water at 8 am he was born at 10:49 am.He weighed 4lbs 10oz, he stayed in the Nicu for 3 weeks( he hadn’t developed the ability to suck).. Once he learned that everything went pretty smooth… No other health problems.. At the age of 6 months we started noticing that he always kept his right close to him and he wasn’t reaching the milestones that he needed to so I decided to call and make an appt with his pediatrician. We took him in and she said well it’s just because he was preemie, well at the age of 9 months he still wasn’t sitting up, rolling over, holding his bottle or anything. I called the pedi back and said something just isn’t right. We went back in and she said she thought that he just needed therapy but she wanted us to go meet a neurologist so we meet with him and he said he want to do a MRI… We went on July 3 2013 and got the results back on July 7th that he had severed a brain bleed and its on the right side of the brain about a 1 cm was affected during or shortly after birth! At the age of 1 he started occupation and physical therapy and now is able to walk( still a little stiff) and uses his right hand… We just started speech 2weeks ago and he is already saying words like apple, peach, cup, outside. It just amazes me of how well he has done and wanted to give hope to all of you! He will be turning 2 here soon and is doin so well!

  66. Natalie Says:

    My daughter Autumn was born at 30 weeks. She weighed 2 lbs 4 oz. I delivered at the hospital I worked at. They didn’t find her (IVH) brain bleed until her third day of life. They came to my room and informed me they did an ultrasound and were sorry to inform me we needed to transfer hospitals. I was stunned to learn my daughter had a grade 4 bleed on her left side of her brain. And she had a grade 1-2 on her right side. The hospital was not equipped to deal with such a need so we were transferred to UCSF in San Francisco. They did multiple MRIs, ultrasounds, and also kept a monitoring device on her head for days at a time. The doctors told me they did not know what the extent of her future abilities would be. They said for sure she would have some physical disability. Either cerebral palsy or tightening in her extremities.

    As of today she is almost 2 years old and has not ONE THING WRONG WITH HER! I felt defeated when the doctors said there was no chance of her having nothing wrong with her. She is smart, she walks and is completely normal. Our family is so so so blessed. Parents out there have hope because my girl is perfect and normal when she had no chance to be.

  67. Nanny B Says:

    Grandmom to twins born 16 weeks early -one has grade 3 bleed and we’re very concerned of course. Babies are only a few days old so with wonderful medical care and prayers from hundreds of people we are hoping for a good outcome. My prayers to all the families going through the same struggles. I believe all things are possible through God so please do not give up hope.

  68. Debby C Says:

    My twins were born at 23weeks 3 day…My son Jake lived 10 days. My daughter Jaclyn who is now 13 going on 14 was just diagnosed with mild cerebral palsy . She legally blind( low vision), epilepsy, has a vp shunt,developmental delays. She lives a pretty normal life . You wouldn’t know she has all these problems meeting her. The Cerebral Palsy was just diagnosed. It’s so mild , tight cords in the back of her legs. She appears to walk normal but has pain doing too much walking or a lot of stairs and fine motor problems. We were given no hope for her. She had a grade 3 bleed . 3 chest tubes, retinopathy of prematurity. Hydrocephalus. Needed a shunt at 12 years old. Don’t give up hope. Miracles do happen.She is proof of that . I was told that she would probably have no quality of life. She continues to amaze me every day!

  69. sammy n leo Says:

    I had my son Leo at 24weeks n 6days due to a sudden placental abruption. It was traumatic n very scary. Delivered by emergency c section he came out 2.2 pound. He went from ventilator to sipap and is now on cpap. He is a month old tomorrow.he has a pda but that doesnt seem to b bothering him at th mo and will probably close intime. My.major fear n concerns are his level 3 and 4 ivh. The first scan showed resolving the second no change.the docs arent doing another one for a month. I assume this is so they can see significant change during that time. These stories I read give me great hope some of these preemies are truly amazin. Apart from his bleeds he seems to be doing okay.I am very scared. They say every baby is different the unknowing is the hardest part. I just pray he comes through with no major problems in the future.he is our little lion. Similar stories n success stories would bgreatly appreciated . Thank you n good luck n keep strong mummys.

  70. Krystal Says:

    I had my third son at 26 weeks and 6days. He has been on the ventilator since he was born. He was 2lbs 9oz. And he was doing so well. He’s now 3lbs .9oz and he’s 18 days old. Then i was told he has a grade two IVH. This was found on the left side at 10 days of life and they did the second ultrasound today. There has been no change. :-( it has not improved or gotten worse. Im worried this is my first son like this. I just hope and pray every day that it will resolve itself since the doctors say there is nothing they can do because its not severe enough. All i do is pray for my son and hope he improves.

  71. Mikhale Says:

    Hi, I am Mikhale. And I was a preemie (born three months early). I was diagnosed with a three degree brain bleed and my parents were told I would not be able to walk, talk, speak, or do anything. I also have a twin sister who only had 1% chance of living.
    We proved everyone wrong!
    We are now both in college, even at the same college! We made honors roll in high school and I played multiple sports. We are great and doing everything normal 20 year olds should do. I do think being a preemie has affected some parts of my learning, such as memorizing, but Im a hard worker so it all will be ok! Theres a possibility I will need a shunt in the future, but I am positive everything will work out.

    Stay positive, stay hopeful, love your child for all you’ve got (just like parents did for my sister and I!).

    Keep strong and remember miracles happen

  72. faiza Says:

    My baby is born in 30weeks and he is just 1 kg. He has brain bleeding at grade 3. But he didn’t need any ventilation. We r going to MRI and doc said if stil there is any block they will go for surgery. Want to know about the process of surgery. how it will do? Any side effect?

  73. Lindsay Says:

    Faiza – I’m sorry to hear about your son’s brain bleed. Every baby is different and it’s not possible for us to guess how he will fare. If his doctor recommends surgery, he is the best person to talk with about the procedure and any potential side effects in this particular case. Wishing him well – Lindsay

  74. Anna Says:


    My identical twin girls were born at 30 weeks. One was 2 lbs 8 oz and the other was 3 lbs 10 oz. Surprisingly, the bigger one had a bilateral bleed (grade 3 on one side, grade 4 on the other) and was diagnosed with PVL at about 30 days of life. They are now 8 months old. She has been getting OT and PT since since was about 4 months and some progress has been made but her arms/shoulders are extremely tight and she is unable to reach/grab or sit by herself yet (although she is getting close!). We continue to pray daily and keep high hopes that she will be able to move her arms and legs as freely as possible. Such a bright, already intelligent, beautiful little girl.

  75. Tanya Says:

    My son Daniel was born at 27 weeks gestation.
    He had bi-lateral grade 4 brain bleeds and hydrocephalus.
    We were told he would never walk, talk, eat… he would never know who we were or himself and that we should remove him from his vent and let him go. We wanted to give him a chance to prove them wrong… we decided to give him until his original due date to improve before we would make any decision. Prove them wrong he did! He just kept fighting and we fought with him. He is an amazing kid… smart as a whip. Happy as he can be…very active and I thank God everyday for him.

  76. Arja kreuiter Says:

    It is so good to hear all these good stories when one is expecting the worst. Thank thank thank you soo much.

  77. Tammie Says:

    Our baby boy was delivered at 35 weeks via C section after my doctor done a routine sonogram and found the baby had a brain bleed. After more testing it was found he had a grade 3 and 4 bleed, and it was about a 10 day old bleed. A day or so after deliver the doctor who performed the C section came to check on me in the hospital (we were sent to a specialist at a children’s hospital and delivered across the street at a full service hospital, we were two hours away from home for this emergency situation) he said the doctors expected our son to act like a stroke victim when he was born but he has been normal baby through all of it! He took a bottle right away, they were expecting to have to put him on an IV for feeding. We spent Christmas and New Years at the Children’s hospital, the shunt was placed 10 days after deliver and we went home 4 days after that. He has been normal baby all the way! He will be 6 months old in a few weeks. We do have therapy once a months so if anything does arise it will be quickly caught and extra doc. visits at different times but so far so good. I think the power of prayer has been amazing for our situation!

  78. Yanli Says:

    My son Ken was born at 23 (+4days) weeks gestation in November 2010.
    He had brain bleeding grate 3 on the left and grade 4 on the right.
    He has 4 lumber puncture at his 22, 29,32 and 36 days old, and finally stabilized after 4th lumber puncture.
    He had large PDA ligated at 7 days after birth, with two 5mm stainless clip in his little body. At 63 days old had eye surgery for stage 2 ROP.
    He was first on ventilator over 90% oxygen and then to CPAP to Nasal Cannula, experienced many fails and sat backs. Discharged after 138 days in NICU.
    Now Ken is 3 and half year old, super active and healthy, reading Dr. Seuss books by himself. He speaks English and understands some Chinese and Spanish.
    But thinking of my past days, I have not even dreamed of he would make a sound, he would able to read and write. Ken has taught me to relearned to always keep hope. Now I am a happy mom, he is my little hero.

  79. Brea Says:

    Our Mary was born at 26 weeks in 2007 weighing in at 1 lb 4 oz. She developed a bilateral grade 4 bleed and had a shunt placed. We were told when we adopted her she would definitely have CP, probably never walk, etc. She is now entering 1st grade, reads like a champ and you can’t slow her down! She has a slight weakness in her right hand, but we do OT therapy once a week. She swims, dances, runs and everyone knows and loves Mary! I know it’s such a scary diagnosis but please know there is hope!

  80. Brittney Says:

    my daughter sage was born 23 weeks to the day. she was 1 lb. 5 oz. and 11 inches long. she had a grade 4 bleed which resolved itself in time. she just turned 3 years old and is only showing a speech delay so far. we attend speech therapy twice a week and she is showing progress. other then that shes is very active and you would never know she was so early.

  81. embre Says:

    Hello everyone i had my son Michael at 26 weeks. Today i got some disturbing news that my baby has a grade 1 bleed on left side and grade 2 on right side. Can anyone enlighten me on the chances of it increasing? The dr said not to worry and this is expected in premature babies but as a mother all do is worry

  82. Sally Says:

    On July 23,2013, I posted about my daughter Samirah and her condition while at the nicu – unfortunately her condition got worse – her brain bleed went from a 3 to a grade 4. Conseqently , she acquired hydrocephalus and had a shunt placed in her brain.
    With everything that went wrong at the nicu, Samirah is far from anybody’s tragedy – she is now 15 month, (adjusted 12months) and she is speaking, singing, counting, mimicing, sitting up unassisted, creepinging and rolling around on the ground, and is now doing the assisted crawling position… Samirah isn’t out of the woods yet with the physical aspect of things, because she does have motor delays (she just mastered the art if sitting up) but I am confident with the help of the Almighty and early intervention she will be on her way to achieving her goals we set out for her.

    I just want to say: don’t give up hope ladies – I was giving the worse possible scenario for my daughter’s outcome, and all of that, in the hopes that I would be prepared for the “unknown” but our children will forge their own way, and they will choose their own paths.
    Thank You And God Bless You All!!!

  83. Sreeja james Says:

    I delivered on August 20 ,2014 ,baby girl wt 600 gram. Now she suffering with ivh grade3 and nec.she can survive with out complications?

  84. Shay B Says:

    Hi Everyone. I know this post is a little older, however, I am struggling to find anyone in the hospital to relate to.

    My daughter was born at 28 w 0 d. She weighed 2 lbs 8 oz. She had a great first day, but then went into RDS, was diagnosed with Grade 3 IVH, PDA, and Hydrocephalus, and a Blood Infection from late onset of Step B.

    I try not to read the internet too much, but cannot help myself. Everyday we get more bad news and it is so hard to stay positive.

    I pray everyday she is one of the lucky ones that this resolves on its own. I have seen her put through so much, I am emotionally exhausted and my heart breaks when I see her in pain.

    There are a lot of stories on this page. Does anyone have anymore success stories with similar problems like my daughters?

  85. Jay Says:

    My wife and I have a beautiful 2 and a half year old daughter who had a grade 4 brain bleed. She’s behind, but she makes progress all the time!

  86. syreeta c Says:

    I had twins October 19th they were born at 23 weeks and 2 days they were born 1 pound 4 ounces each they both have bilateral bleed on the brain my son has a stage 4 bleed on the right and my daughter has a stage 4 in stage 3 bleed on the left and the right I was told they will never walk talk probably be blind and have cerebral palsy I was asked twice to take them off the ventilator but at a month old they are ready to pounds 6 ounces and visually looking better and better praying for hope that my babies become strong enough to come home your story really encouraged me to hold on

  87. adriana Says:

    Hi I have twins but they told me my genesis has ivh stage 3 &4 I am so worry for her she is almost one month old she is doing good with her oxygen but I am so worry with the bleeding she has hedrocephalia hoping for the best we are praying a lot.

  88. Kyla Kalluk Says:

    Hi i had a son on May 6 2013, he was born at 27 weeks and 1 day he was 2 pound 2 ounces. We live in the north, anyway. he also had bleeding on the brain but i dont know what Grade he was in. Today he is now 19 months old and still cant walk, he could talk a little bit. I am just wondering if any of the babies who had bleeding on the brain can walk? he has his balance and everything but doesnt want to walk. And im wondering if it all went well, he is also my first kid. please answer my question…

  89. Justine Says:

    My son was born at 32 weeks, weighed in at 4lbs and 7oz, and had a grade IV IVH. We were told to prepare for a host of terrible outcomes.

    It has been 4 years, and he has not had a single delay. He is in full time school, and is progressing beautifully.

    So Kyla, to answer your question- yes. My son had significant bilateral bleeding, and he is walking. And running. And riding a bike without training wheels.

    Every situation is different, of course, but I wanted to be sure that a long-term success story is represented :)

  90. Judi Says:

    I had twins born late in my 25th week of pregnancy. One weighed 1 lb 13 oz, the other 1 lb 12 oz. The smaller twin had a bilateral grade III ivh. He later developed communicating hydrocephalus. Both had a myriad of preemie Nicu problems and were globally developmentally delayed. Both suffer from mild cp, horrible asthma. My brain bleed son also has coordination issues, eyesight problems, and produced no growth hormone. After much medical intervention, therapy, hard work and prayer both boys have been accepted early decision to an ivy league school in the fall. Few kids they attend high school with know they have any serious issues. My son with the brain bleed scored a perfect act and triple 800s on his sat 2s. He was an ap presidential scholar before his senior year. My other son who is healthier is able to run cross country on his high school team. They both volunteer at a therapeutic riding center helping other kids with special needs. We worked extremely hard with them but we were repeated told to diminish our expectations. But we never did. At times each has become a bit depressed. Not just suffering from teen maturation issues, but also from the loss of some physical skill issues. Neither is a all star athlete. But over all today they are very happy. They are a bit nervous but very excited about attending college in the fall. Due to health issues I will probably check on the more than most parents, but I think they will successfully transition and become independent productive adults.

  91. Rene' Says:

    My son was born at 30 weeks and weighted 2.9 lbs I had to have an emergency c-section due to sever preeclampsia, hellp syndrome and mthfr and placenta ablution, my blood pressure was so high he wasn’t getting enough oxygen he came out not breathing, 2 days into his nicu stay they discovered he has a grade 4 and grade 3 ivh that turned into hydrocephalus 22 days later he had a reservoir put in and they “tapped” his head 3 times a week he is now @37 weeks his hydrocephalus is what they call stable and hes only got his head drained 1 time this week and it stayed the same he does have some damage to the brain where the blood sat at and he will have some delays just don’t know to what extent, but he’s a fighter he’s 5.9 lbs and drinking bottles on his own, we’re just waiting to talk to the neurosurgeon to see if he thinks he still needs to put a shunt in.

  92. Heather Says:

    My son was born in 2012 with a grade 2 bleed. since then he has developed right on scheduled with everything other than his speech which he suffers a 30% deficit with, however, i see improvement and hear new words from him everyday. dealing with this is hard and its scary.. Stay Strong Mommas. you’re doing a great job and everything will be as it should be.

  93. Derekia Says:

    Im a mommy of 4, i just had my second son Nov. Of 2014, he was born at 27 weeks and 2 pds 10 oz, at first everything was just fine and then about 4 weeks later the let me know there was some bleeding on the brain, a few weeks and a new hospital later he has a grade 4 hemorrhage bleeding on both side but more so on the right… he has a reservoir places and today they told us that his brain is damaged and he may not be able to do anything. They even told me there’s another option of just letting him go. All i have done is cried and prayed, i don’t know what lies ahead for my little one but i cant live with letting him go….

  94. Daniela Says:

    Dereika, the lord id with you. He is there to hear and answer our prayers. Jan 4th at 25 weeks I gave birth to my twins, Juan Felipe and Diego Andres, Juan is now an angel, God decided that way. Diego stills here, he he had Ivh 4 grade in both sides and he got a shunt last monday. Thanks God he is recovering well. I have faith he will have a bright future and God will do a miracle.

  95. mbd Says:

    My twins are now 11 but were born at 28 weeks. They each had their struggles with different issues. Today they are both strong and above grade-level reading skills. One had a Grade 4 IVH resting in a left-sided hemiperesis. I recall her neurologist said we might have behavior problems down the road. This seemed like nothing back in our 59 NICU days. Today, it is everything! I find very little literature on older children that had IVH. We struggle a great deal with these behavior issues. At age 11, she has raging fits like a toddler that she cannot control. We feel very isolated but wonder if there is anyone out there with a grown child that has advice for us.

  96. del Says:

    Hi I am a proud grandmother of twin girls they were born at 30 weeks 3 days twin one was 2lbs 11 and twin two was 3lb 1. It appears twin one is doing extremely well doing everything on her own however twin two we were told has a grade three bleed on her left side and is requiring extra help with her breathing. The specialist is going to complete another scan within a week however he is hoping it would correct itself. its great to share your stories this certainly has help us as a family to try an understand what we should expect either way. But like everyone else we will keep praying and hope for the best for our newborn twins

  97. Gabriella cook Says:

    Hi I’m gabby, and my son, aiden was born at 34 weeks and 4 days. 5 lbs 2 oz. He was born with a grade 2 hemorrhage (ivh) and was also experiencing seizures within the first 24 hours of life. He was transfered to the nearest NICU, here in Alabama. Where the gave him many, many, doses of phenobarbital. After many doses the first dayhe only had one routine dose the next day. He didn’t have anymore seizures and was released at two weeks old. I just want to say it gets easier. I remember the first day he was there he was holding my finger and all of a sudden had one of his episodes… I watched my baby stop breathing and turn blue. And watch three nurses and a doctor bag him multiple times. Today he is a very vocal 3 1/2 month old 11 pound boy. We go to his neurologist , Monday. Whom, which we haven’t seen since he was two weeks. Praying for good news

  98. Lynnsey Says:

    I developed pre-eclampsia during my pregnancy and my blood pressure was through the roof for the last few weeks of it. I had an emergency C-section at 27 weeks and 3 days because I had a reverse blood flow in my placenta (all of the blood and nutrients were going back to me and not my baby) and my daughter was diagnosed with a Grade 2 IVH the next day. The doctors told me that there it would probably get worse before it gets better because she was so tiny and they told us it was rare for it to resolve itself on it’s own. A week later they did an ultra sound and it progressed to a Grade 3. They told us that since it was at a Grade 3 she would most likely have some type of disability but we wouldn’t know for sure or how severe until she was a little older. They told us that she wouldn’t be able to walk or talk until she was two years old. On May 18 when she was 6 weeks old they told us that the bleeding had finally started going down. She’s still in the NICU but shes getting better and stronger every day. She doesn’t seem to have any problems right now and she should be coming home soon but I’m going to do everything I can to nurture and help her.

  99. Lulu Says:

    I have identical twin sons who were born bang on 32 weeks. My first born suffered a grade 4 bilateral IVH and as a result has hydrocephalus which is managed by a VP shunt.
    He is 17 months old (15 corrected) and this week took his first steps. He’s bright as a button and funny, kind, affectionate and smart. I’m not sure what the future looks like for him; but to date he has surprised me time and time again. The day we found out about the IVH I thought he may never walk, never talk and need lots of support. It just shows that every baby is different.

  100. Barb Says:

    Hi All, my granddaughter, Ellie, was 28 weeks, 2lbs. 13 ounces when she was born. She suffered a grade 4 bleed on the left side of her brain and just like everyone else, we were all terrified. They told us she would have a high risk of CP and her speech would most likely be affected. Well today she is 13 months old and her development has been perfect. The physical therapist comes to their home weekly and he says she looks perfectly normal. There is hope, take advantage of all the intervention available for your little one. Talk to them constantly and love them. Ellie is the happiest baby around and a joy.

  101. NJrMom Says:

    My son was born at 27 weeks 5 days at 2lbs 10oz. He was placed on a ventilator because his lungs was not fully developed. A few days after being on the ventilator I was told my son suffered a grade 4 on the right and grade 3 on the left brain bleed. They decided to watch and see if the brain would repair itself. That did not happen so he had surgery for a reservoir to a month after he was born. The Drs would tap his reservoir every day and that decreased to every other day to not being done at all. After being in the NICU for about 2 months they decided to place a g-tube in to get him to come home since feeding was the only thing keeping him in the NICU. After 86 day my son finally came home. He is now 9 months. He is starting to meet his milestones, but does have therapy at weekly. Have hope and faith because our little miracles are here for a reason. All kids are not the same and the Drs are just giving us the worst case scenario because that is what they have to do. They did not think my son would make it, but today he is 9 months. He is one of the happiest babies I know. I am blessed to have him in my life.

  102. kerrie Says:

    Hi my son was born at 30 weeks I’m going through his discharge notes and its say he had a ultrasound on his brain, its says right sided cyst? Grade 2? I remember them telling me it was a resolving bleed. But all I won’t to know is why there is question marks next to it? Does it Kean he might not of had one? But surely u ither see a bleed or not and surely if the doctor wasn’t sure then he wouldn’t of graded it? Please help

  103. Brittney Says:

    Njrmom. Im so to hear that he is hitting his milestones , I will keep praying for him. Does he still have his gtube or is he eating on his own? I just found out one of my twins has grade 2 on one side and grade 3 on the other. I am so scared

  104. Brittney Says:

    Thank u all for your stories they help me so much, may the lord keep blessing all of your babies. I am so scared one of my twins has grade 2 on one side and 3 on the other, I don’t even know how to deal w this.

  105. Natoe Says:

    Hi everyone. About a week ago my daughter had a problem of oxygen deprivation during her c section birth because she bridged and doctors struggled take her out in 37 weeks. They then mmediately admitted her into nicu and put her on the ventilator for 5 days. On the 7th day they discovered a grade 1 bleed through ultrasound. Two days later they discovered a grade 4 bleed on the left hand side of the brain. Please pray with us for her. We believe God created her purpose and the purpose will dictate. Clinicians are telling us there is nothing much they can do. We just need to pray for her. We are just believing in Gods healing.

  106. Laura Says:

    What are the chances for a bleeding that was resolved to come back in a baby???

  107. Kathy Says:

    My 26 weeker had a brain bleed grade one and “resolved” itself , but I don’t know why at 15 months is diagnosed with Celebral Palsy (spastic quad) I am so sad and upset. He won’t be getting an official MRI until 24 months . Sigh*

  108. Mahvash Says:

    Hello everyone, reading all your experiences is giving me hope. I had triplets 29week gestation. We lost two of them to NEC. 1 baby girl is now 2 months old. She had her head scan yesterday and they told us she has a 3rd grade bleed IVH on the left side of her brain. I am just devastated and numbed. I cry all the time. The doctors said its not life threathing “as yet”!. I am so scared. I pray to God so much and I have faith that all will be well God willing. Thank you for sharing all your stories because that is giving me strength.

  109. jennifer Says:

    I have heard so many different story’s about kids getting all kinds of levels between 14 bleeds, my son got a grade 3 and this was MNS after birth in nicu, due to him being bornwith a birth defect on tummy, he then got menigittis from a sick kid and my son lost his hhearing soon after, around 3 mons his head got bigger and bigger, no one said anything about draining or doing MRI to check daily like I have heard in some story’s that the smaller bleeds go always after being checked daily by MRI ultra sounds, my son got one ultra sound they made us cone to a back room tell us he had a grade 3 bleed and it was due to stress of his tummy surgery after birth….. not like baby’s getting it few days after birth like others… so I’m wondering why we were told about his bleed and him going to need a shunt for life with his grade 3 bleed, they said nothing as if this could kill him or a death sentence, just a shunt like it was nothing…. then he lost his hearing from the meningitis so he gas a ci and now he has never even get a MRI only ct and x rays…he has many drs, all tell me different, he seems to have headaches all the time, now seizures too after about 3/4 years old….he is so happy yet seems to be in main all the time…. no one said to me when this happen that they could do some things to try to reduce the bleed, or what it really was or what will happen…his head just got big and a stunt was thrown in and a month later needed to be fixed almost popping his eye out from pressure now a perment lazy breathing OE eye site problems just no awnsers, gone from hasboro to Boston now… he is 7 and I’m hearing kids don’t live long with this problem but ever Dr is different with their answer, anyone have any ideas or thought….thank you

  110. Boyana Says:

    Hi, I just gave birth to a baby boy at 25 weeks and 1 day! He had a grade 3 to 4 Bleeding in the brain. Everything else is good so far! It is very hard! I am trying to find out what other parents do and how they deal with this! I am so scared! I am hoping for the best, but if my baby is disabled for his entire life, what do I do? Please anything helps, I need information and other parents in the same situation I need to hear their experience and advise!

  111. Niki Says:

    My friend had a baby girl at 25 weeks and she is doing ok. She will be turning two on Nov 5th. She had a level 3/4 brain bleed. She had her eye corrected( one was crossed) and the bottom of her bowel was dying and she had surgery to cut that part off. She has mild cerebral palsy on her left side. She isn’t crawling or walking, and just learned to sit up by herself not too long ago. There are things that go along with having a micro preemie that makes you a stronger person. You will learn as you go…

  112. Tanisha Says:

    My son was born at 24 weeks gestation, weighing 1lb 3.2oz. He developed a grade 4 bleed on both sides of his brain at 2 weeks old. The drs. Advised us to terminate him because he had less than a 1% chance of survival and if by chance he did survive he would be severely brain damaged. My husband and I are Christians and refused to terminate our son’s life. Our son is now 14 months old and although he has been diagnosed with cp, he is a active, happy little boy. Developmentally he is behind in reaching his milestones but considering the bleed destroyed almost the complete left side of his brain he has even astounded his doctors…some of the same ones that wanted to terminate him and gave his prognosis as grave. Our son was in NICU for 4 months and the drs. Placed a DNR on him without our consent. We were told if he survived he would be unable to see, hear, talk, walk, eat or breathe on his own. our son wears glasses and has a mild case of CP….God is faithful. For those who are going through something similar….trust God for your child’s complete healing.

  113. selogadi Says:

    My twins were born at 30 weeks n 4 days.i just buried my daughter.she was once at 22ml every3 hours.then she a grade 4bleeding.she got an infection.her body could not fight it.her twin brother brother is in hospital with grade 2 bleeding.he also has a anfection that’s been treated for 14days.I’m so scared. I beieve god has let us down.

  114. Keely Says:

    Hi , would just like to find out some information from parents that has a child with a grade 4 bleed & how they are coming along so far ?? And if anyone has an older child with that grade of a bleed to , how are they doing now ?? I have been told my gorgeous little girl who was born at 28 weeks at 1 pound 2 ounces , developed a grade 4 bleed .. She is not 12 weeks & 5 days , but proper age should be 1 week .. And am just so scared because they doctors make out as if it’s going to be the worst case ?

  115. fran Says:

    Can a grade 3 & 4 brain bleed that’s resolving, stop resolving and start bleeding again? Or anything of that nature?

  116. Honesty G Says:

    My daughter was born at 30 weeks 1 day. 2lbs 14oz. IVH with grade 4 brain bleed on the left side. Also diagnosed with PVL. We started physical therapy at 4 months. She is now 18 months. She is walking and almost running. She has been walking since 15 months. She is not saying any words but we tonight her some signs. She understands most of what we are saying to her and follows most commands. There is hope! Prayer and hard work will get you there!

  117. Natalia Stone Says:

    My baby boy, Jaxon is almost 6 weeks old. He was a twin, but his brother Jerry was Acardiac (with a heart) and we knew from the beginning he wasn’t going to make it. Their diagnosis was Acardiac/TRAP Sequence. They were born via emergency c section at 24 weeks and 2 days. Jaxon was 1 lb 3 oz at birth (he now weights 2 lb 3 oz). When Jaxon was 3 weeks old, the doctors told us he had a level 4 bleeding on his left side and the right side was clear. A few days later we were told that the right side developed level 3. He received a reservoir that is tapped every day or every other and they said “most likely he will need a shunt”. Yesterday, he got an EEG to see the activity in his head because he was having “seizure like activity” by de satting and dropping his heart rate. We are trying to get him off the ventilator now but are struggling with that. The doctors told us yesterday that we are trying to see if his activity is due to him being preemie or his brain damage. They aren’t sure if he will ever eat on his own, be able to reach milestones, or get off the ventilator. The EEG results say his brain is “discontinuous” and doesn’t show seizures so we will repeat the EEG in 2 weeks to see and compare. My husband and I are completely devastated and don’t know what to do or think. God, hope, and faith are all we have. We just have to take it day by day. Everyone’s stories give me inspiration.

  118. Amber Says:

    My daughter was born at 36weeks. The grade 3 brain bleed was found at 21 weeks when we were finding out the sex. The bleed had already stopped and was healing in the womb. She weighed 4lbs 10oz at birth. She didn’t need the nicu and in fact came into the room with me. At 3-4months is when I realized she had a slight development delay. “Help me grow” is a free and great program to sign up your children. They help with delays with therapy and follow your child till age 3. Since then she sees an OT and PT every week. She’s happy healthy and progressing very well. She has left side weakness but that doesn’t stop her; she is finding her way around. She turns 1 year soon and there is still a lot of therapy to look towards but we are optimistic. Each child is different but I think early intervention and starting therapy asap helps a lot. It’s important to be patient and to stay optimistically motivated in helping your child’s development. Finding support with other parents helps a lot too. Its relieving to known I’m not alone.

  119. Tamara Says:

    I am dealing with similar things with my baby girl. I had her on christmas eve at 28 wks and 2 days she weighed 2lbs 2oz. 3 days after she was born the doctors told me she had a grade 4 bleed on the right side of her brain and she had a stroke which has damaged the left side of her body and I was also told that the part of the brain that has been damaged will also cause her to have learning disabilities and possible cp. She is only 12 days old and is still being monitored once a week by ultrasound. This week’s showed more bleeding and swelling. I’m praying harder than I ever have before. Your stories above have gave me more hope than I have had. So thank you and good luck to everyone

  120. allie Says:

    hey everyone, to give all of you here here a little hope … i myself was born at 26 weeks as a twin after my mother had preeclampsia and went into labor early. we each weighed just under 2lbs. at the time, preemies of this size harldy ever survived. my twin sister was smaller and did not make it. i was given a less than 50% chance of survival after a grade 4 brain bleed. my parents were told that if i did survive, i would be severly handicapped and suffer chronic pneumonia, etc. i am now 26 and in perfect health, despite the prognosis. so keep your heads up! :)

  121. Karan Says:

    Hi I have baby boy born at 30 week he has grade 4 blidding on his left side his right side brain was clear so there any issue in future or that problem will be going solve

  122. Sade Ware Says:

    My LO was born at 24 wks, jus found out on Monday that ge suffered Level 3 bleeding. They did another MRI om Thursday and it got worse. He is getting the VAD procedure to help release the fluid and may require a shunt later dwn the road. I am afraid, scared, depressed, and feel hopeless. All i can do us pump milk and think about all of the outcomes that were told to me. I love him so much. He is my first born. Seeing other stories has helped but each baby is diff. I jus wish i could see what is down the road for him

  123. Vincent Says:

    Hi I’m Vincent Phillips, and my son was born at 24 weeks of gestation. He came with out warning. On the day of his birth we had just a monthly checkup. Little did we know it was going to be far more then that. So anyways after her water broke tried to slow down the contractions so they could rush her to a hospital that had a NICU which was about an hour away. On the way to the NICU she gave birth to our little boy at 6:06 pm. From then on until roughly 7 they did there best efforts to resuscitate him and succeeding, but we were told there would be many complications down the road. As of right now my little prince has a grade 4 bleed in his brain which has traveled to outside the brain. Everything else with him is going smoothly. He’s off of the blood pressure medicine and another one that I guess I’m not really sure on which it is. Everyday they lower his ventilator settings because he seems to be doing good with the whole breathing thing. So our only issues is the bleeding of the brain. Elizabeth and I are just wondering if there is Anyone out there with a similar situation that we could reach out to .

  124. Marlene Says:

    Hi. My son was born at 27 weeks emergency C section. A week after he was born they did an ultrasound and found that he has a grade 4 bleed on the left and grade 3 on the right. He has over come so many obstacles so far and was getting tapped every two weeks. We were told that he will have cp on his right side.
    He will be 3 months old I’m a week and the fluid in his head is not draining and head circumference is jumping daily. I’m so hurt and angry at the moment because he was doing so well and can’t figure out what happened . He’s my miracle baby and I pray each day that God will heal his little head and he will be ok.
    Thank you for sharing your stories.

  125. Sam Says:

    I just want to give some hope to people. My boy was born at 27 weeks and weighed 1llb 7oz (700g) He had a grade 4 bleed on the right side, we were told 80% chance of being wheel chair bound not being able to use his left side at all. He has just turned 10 years and there is nothing wrong, we have been incredibly blessed. These babies have unbelievable strength and adaptability and character all of their own. 10 years ago in the depths of dispare a wise old lady said to me “special babies for special people” that brought great comfort to me and I knew that no matter how bad he would be, he was my special boy and I would cope with what ever was handed out. Love to all you parents, stay strong.

  126. aLEXIS Says:

    my premmie was born at 25weeks and3 days she has a 3 grade bleeding on her brain god have a way of making thing better i pray and iam going to keep the faith she will get better and she will have no problem prayer is powerful just remember god is with us always until the end my little miracle is a fighter, her name is Tianna and i love her with everything in me more than u will ever know thanks and continous to pray for me u guys much LOV.

  127. Marjorie Says:

    My son Silas was born at 30 weeks 5 days with a bilateral grade 4 due to my water rupturing.he weighed 2 lbs 13 ounces. He is 20 days old he hasn’t had any other issues he is breathing on his own and holding his body temp and weekly ultrasounds have given us hope because they haven’t gotten any worse and are starting to show signs of the ventricles closing and the brain absorbing the blood that is there. He has had a couple Brady’s (heart rate dropping) but he recovers just fine and they say that it is normal at his age with being a preemie. He is very alert when he is awake and loves his binky. He weighs 3 lbs 6 ounces today and is steadily gaining weight. We get to try the bottle in a couple days and as long as nothing gets worse he still might be able to come home on his due date. These stories help so much and having hope is the only thing that keeps me strong for him. He’s so beautiful and perfect in my eyes and I cannot imagine him having to suffer ever. Thank you to everyone who shared their story I figured I would share mine so far….

  128. Lindsey Says:

    I was born with a bleed on the brain in 1980 my parents were told I wouldn’t survive nearly 36 years later I’ve lived a completely normal life

  129. sphih Says:

    Guys am worried about my baby he seven months now but he can’t follow the object when im placing it in front of him can be possible of not able to see? he was dignose with stage four bleeding on the brain , pls guys help me am stress nw

  130. miranda Says:

    My son is about to be 8 years old! He was born at 26 weeks gestation and after a month they discovered he had a grade 4 bilateral hemorrhage on the right side. He can sit up on his own, roll over, and many other things. Just pray and keep faith because god is the one true physician of this world

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