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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133 Responses to “Brain bleeds in preemies”

  1. 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.

  2. 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

  3. 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

  4. 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.

  5. 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.

  6. Laura Says:

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

  7. 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*

  8. 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.

  9. 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 eye..no breathing OE eye site problems just no awnsers, gone from hasboro to Boston now…..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

  10. 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!

  11. 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…

  12. 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.

  13. 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.

  14. 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 ?

  15. fran Says:

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

  16. 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!

  17. 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.

  18. 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.

  19. 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

  20. 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! 🙂

  21. 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

  22. 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

  23. 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 .

  24. 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.

  25. 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.

  26. 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.

  27. 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….

  28. 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

  29. 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

  30. 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

  31. AshleyO Says:

    I had my Kiddo May 8, 2013 she came very unexpectedly. She was born at 27 weeks 2 days, weighing in at 2lbs 4oz. We were told she suffered from IVH grade 4 on the right and 3 on the left. Doctors gave us the worst case senerio, our little girl most likely will never walk, talk, and may have vision and hearing issues. I feel they have to say those things to you.
    I would search high and low on the Internet for answers hoping to hear something from others although I heard some good and some bad still I never felt I got what I was searching for, so I will tell you my story in hopes this will help anyone out there.
    So far our journey has been long and not easy, but I would like to say I wouldn’t change this journey for the world!
    Our LO eyes are fine now although she did have surgery at the age of 1. Her hearing is perfect! She was diagnosed with CP spastic quadriplegic. She gets speech, Occupational, and physical therapy each one time per week. She can not walk or crawl. She can sit with support only for a few seconds on her own. She never received a shunt, but is still monitored yearly with an MRI. We still receive good news!
    She eats on her own although she’s a little slower she gets stronger as she gets older. Since she came home from the NICU after spending 3 months we got her engaged right away with therapy and early on services. I feel this has been a huge help for our kiddo! Our kiddo is smart, loving, and so very happy! She can say a few words hi, bye, mom, dada, papa, nana, yes and shakes her head no. She can say more, please, and thank you in sign language. She knows all her body parts and colors. She is now three, although she is behind she continues to progress! She started school at 2.5 which has been amazing for her development she has been doing so well she will be integrated into a less severe class room with kiddos who have some diasabilities but not much. This is huge for us!
    The only thing I can say is all children are different. Always be there biggest advocate if you feel a doctor is not right for ur kiddo get a second opinion! Always ask questions! Get them engaged with services/ therapy as soon as you can( maybe for more of the serious grades). Never give up, this can be a tough journey but this is one I would never change good luck out there! I hope this helps someone.

  32. Samantha Says:

    It’s so nice to read other people’s stories. The majority of them give me hope.
    I had my twins 2 weeks ago who where born at 27 weeks 4 days weighing 2.8 and 2.4. Isaac and Gabriel.
    I have been informed Gabriel has a grade 3 bleed on both sides of his brain and he has also been diagnosed with Down’s syndrome. However he is doing better than his brother with feeding, breathing etc. I’m really worried that his bleed may get worse and how his current bleed is going to effect him especially as he’s been diagnosed with another disability. I just hope and pray both my babies get through all these horrible obstacles.

  33. missy Says:

    Fourteen years ago this month we lost one twin at 28 weeks which sent me into preterm labor with her sister. Sister was born with a grade 4 IVH and other problems as well. She was just one pound! At first we thought that she would just have to fight being a micro-premie but then her brain became an issue too. We tried everything they had back then and she passed away in my arms. I’ve read other posts here and no doctor, and we had several, ever said for us to terminate our child!!! NOT one! They told us what was going to happen if she were to survive her premature status but never once did they say you must not keep her going. I knew from the moment I saw her that she wasn’t mine to keep. She was so small and fighting so hard and watching the pain she was in, I know they gave her meds, but still it’s not right to see a 28 week old baby that is so small go through all of that in a NICU. We took our chances and prayed for what we should do and then she was gone. She wanted to be at peace with her sister. It was and will always be the hardest part of my life. It’s changed me forever and has made me a different mom today. I have two boys now. I learned that I can’t carry girls at all. So even if my twins had been born on time etc. they would have passed away at some point in time. Crazy how this all works. I’m praying for all of the moms/families on this site. It’s the hardest thing anyone should ever have to experience.

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