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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189 Responses to “Brain bleeds in preemies”

  1. Karen Says:

    My baby girl was born at 38 weeks with grade 4 bleeding on her left side from a hard delivery where they had to use vaccuum extraction. After her MRI they said she also had a stroke at around 7 months in the womb. She was in the NICU for 10 days and went home on oxygen for 1 month.

    She’s now 3 months old and has met all her milestones except she doesnt track objects. I’m also calling her doc tomorrow because her left eye tends to go towards her nose while the other looks straight and her eyes also shake. Other then this, so far she is a healthy normal infant. She eats very well breastfeeding, can hold her head up very well, moves all her limbs just fine, opens and closes both hands, and has started cooing and making baby babble sounds.

    Good luck to you all. The scariest part for me is just not knowing. Fortunately for me all the worry hasnt gotten in the way of bonding but I’m always looking at her closer then I would if she had a normal birth. Every little thing I wonder if it’s normal or a sign of some developmental delay or a sign that she will lose some function like speech, vision, hearing, etc. I’m trying not to dwell on it and we both enjoy eachother a ton there are a ton of smiles getting passed back and forth but how can I not always be watching for things when I know that the earlier things are realized the better the chance that she can overcome it with therapy and tools to help her full potential.

  2. Carmela Says:

    Can you send me your story cause my son is going through the same scenario with his son so i can forward it to my son

  3. Leslie Thompson Says:

    That you for this! My son is also going thru this with his baby. Prayers to you!!!!!

  4. Jessica Valentin Says:

    My son was born at 28 weeks October 16, 2016 weighing 1 pound 12 ounces. I had to have an emergency c-section. After he was born they ran different tests on him. It came back his brain started bleeding while I was pregnant with him due to the umbilical cord being wrapped around his neck “very tightly” twice. He then had a grade 4 bleed causing a “massave amount of brain damage”. He stopped breathing 5 hours after birth.

    After he started back breathing it seems like he came back stronger than ever. He had to have 4 blood transfusions within his first week of life. On October 30th he went in for surgery to get a temporary shunt placed in. He had breathing tubes, breathing tubes, his heart rate kept dropping then his oxygen.
    When people tell you ” if you can get threw the hard part the rest is easy”. I can honestly say at first I cried what seems to be every second of the day for my child trying to keep it together around his 5 year old sister. One week went by and it seemed like the shunt wasnt working. You can tell the fluid was building up in his head. Two weeks passed by all the fluid had drained my baby opened his eyes more. It was the best day off my life aside from the birth of my daughter. He was fighting so hard to be here I couldnt help but to cry again. 3 weeks passed by and he had gone down on his oxygen slowly breathing on his own. That by itself brought joy to my heart he has made me so proud of him. He is now 6 weeks old. He’s breathing on his own he’s learning to take the bottle and is now weighing 4 pounds 6 ounces. Never would I have thought that at age 26 I would be going through this. Just as I was starting to lose faith God answered my prayers. Although we still have a long road ahead of us I know we are able to get through it.

    My learning experience from this is that there is always a light at the end of the tunnel.

  5. maret Says:

    Hey Jessica i have similar story can i write to you in private?

  6. Erica Says:

    My son is 9 months old, and is a premature twin due to TTTS. He was born with IVH level 1, (which I just learned is the best level). He has not met any of his milestones. I am lost of words because I’m not sure if he has progressed in IVH or if this is just a prematurity delay. My son is not sitting on his own, has poor head control, and has just started reaching for items. Does anyone have any similar stories to share?

  7. Erica Says:

    Dineo, you are so inspiring! My thoughts and prayers are sent to you and family. God is always great, even in life’s hardest trials. Thank you for sharing!

  8. Rhonda Says:

    I have great granddaughter born at 23 weeks on Christmas eve and weighing 1 lb 3 oz. The neurologist has determined she has a cat 4 brain bleed on the left lobe and a cat 1 on the right cerebellum. She has had 4 blood transfusions and platelets and today the neurologist told her mother she may need a shunt. She is struggling so valiantly to survive. It is hard to watch her parents struggle with the ups and downs of having a micro preemie in the NICU. This is their first child and likely to be their only one due to complications. Does anyone have experience with this type of situation? Are shunts successful in babies this young? We have a world class Children’s Hospital in Seattle.

  9. Nicki Says:

    Hello Jessica,
    I am going through exactly the same issue as you. My baby has just had a temporary shunt placed, has all the same symptoms as your babba. Did your baby go on to have a permanent shunt?

  10. Goli Says:

    Hello,

    I also going through the same thing. I gave birth to my twins at 24 weeks on November 2016 . After 2 days being in NICU they told us my son has grade 4 and my daughter has grade 3 bleed. My son passed 10 days after due to other complications. My daughter is still in NICU (its been 60 days ) and had reservoir placed 3 weeks after birth due to hydrocephalus. Her dr. is waiting for her to get to 2 1/2 killo before placing the shunt.

    what worries me is what will happen in the future, her drs don’t really know what will happen to her.

  11. cuthbert Mutyora Says:

    My baby Girl was born health , soon after delivery she didn’t cry only to cry after six hours. After 2 days the doctor told me that your wife was to remain admitted because the baby was bleeding from both the heart and brain .I asked the doctor he said he could not understand. Unfortunately ,she passed in towards mid nicht of her third das battling for life.Help me to understand the cause of death

  12. Shaquita Says:

    My son is aldo going through this…my twin were bron at 24 weeks. My daughter had no bleeds but my son had a grade 3 on one side and a 4 on the other. He has developed hydrocephlus. However my son is alert and moving they are only 30 wks corrected. So 7 weeks old. I have a journey to go through but i havr faith my son will be just as normal and healthy when he gets out.

  13. betty Says:

    Hi karen, can you update me on how your daughter is doing? I don’t see many stories about babies past 35 weeks with grades 3 or 4 bleeding. I know every baby has a different response to this condition however I would like to know more about your experience. My son was diagnosed with grade 4 a couple days ago and is currently in nicu being monitored. This is the most difficult thing I have ever had to deal with and hearing stories about others development seems to help me stay positive. Thank you.

  14. Jody Says:

    My brother and his wife just delivered their twins (boy and girl) at 23 weeks. The baby boy did not make it and passed away after 2 days. The girl is a fighter and has been doing as well as can be. Today they said she had a brain bleed 4 on one side and a 2 on other side. I am praying that God takes care of her and pulls her through. Losing the baby boy was so hard for them but they know they have an angel watching over his baby sister. I hope someone can give me some hope that all will be okay.

  15. Neva H Says:

    My daughter is currently 8 years old. She was born at 27 weeks, went into cardiac arrest on day 4. Had been intubated and on the ventilator for 6 weeks. At week 7 was told she had a grade 3 IVH. Was told to prepare for the possibility that she may not walk nor talk. She met all her milestones post release. The only long term effects we’ve noticed are muscle stiffness in the hands and feet, minor fine motor skill difficulties and a slight lack of hand eye coordination. I hope this helps some of the moms and dads who need some encouragement as their babies fight to survive. Ps. They dont stop fighting.

  16. Amie Says:

    There is no such thing as “the best kind of bleed” All are horrible and all can cause damage.

    There are kids out there that have had bilateral grade 4 bleeds /
    post-hemmorhagic hydrocephalus and are walking around, jumping, talking etc. Yes, grade 3/4 are much more severe and the likely hood of it causing some kind of issues down the road are quite high.

    But, don’t kid yourself, there are also kids out there that have had grade 1 or 2 bleeds that have deficits, cerebral palsy etc. Of course the likely hood of it happening​ is a bit lower.

    I believe it’s like a lottery. No one can really say how well a kid will do…..It’s really that weird. The brain is an amazing, strange thing.

  17. Sara Says:

    Thanks for your comment Amie. We don’t always know what causes CP. The brain damage that leads to CP can happen before birth, during labor and birth or after birth, while the brain is still developing. You can read more on our website: http://www.marchofdimes.org/complications/cerebral-palsy.aspx.

  18. Carla Says:

    Thanks for ur story cause I can’t stop crying I have a 24 week now 25 week premature baby that has hemorrhage n the brain n its a 3 trying to stay strong for my 9 Year n one year old n I just asked myself y let her live n go threw life with problems all I want to do is cry thinks for a better view

  19. Jennifer Lizardi Says:

    Hi my son is 24 weeks a one day the doctor told me he has Intraventricular hemorrhage stage 4 has anyone know about this and what could happen right now he only 1 week and 5 Days old and he open his eyes n moves alot im Just very scared and worried cause they said the worse is stage 4

  20. Odelia Burton Says:

    Your story has helped me cause my 16 year old daughter just gave birth to her son at 25 weeks. He was 1 pound 13 ounces and they called us this morning to let us know 4 days later after doing so well he has a stage 4 brain bleed. Just praying for the best outcome

  21. Jill Says:

    My son was born at 32 weeks and had a grade 3 bleed. He was in the NICU for 40 days and was hypertonic. We began physical therapy in the NICU and had PT and OT for the first year and a half. He was very tight and had trouble primarily with his left side (trunk and arm). We were extremely persistent with stretching (every diaper change). He is now 2.5 and you would never know there was concern he would not be able to walk. He runs, jumps, throws- everything a two year old is expected to do. I know when I first learned about his diagnosis in the NICU there were so few stories that I was able to find about “normal” outcomes so I wanted to share.
    The only lingering side effect of the brain bleed is he has had seizures when he has a high fever (over 103)- very similar to a febrile seizure but the neurologist believes it is due to the area of his brain that was damaged from the brain bleeding.

  22. Margaret Says:

    Hi just wondering how your Baby is doing now we just had baby at 30 weeks level 3 bleed on left side waiting to go for scan in two days hoping it will have stopped so worried

  23. Loren Says:

    I saw your post about your son on March of Dimes. We went through something similar. I have twins born at 29 weeks, my son had a level 3 bleed and acquired hydrocephalus. They placed a reservoir, but by the time he was ready to come home they were not needing to tap and his fluid was draining on its own. We never needed further surgery like etv or shunt surgery. He is now 5 months and his MRIs look really good and stable. He meets all of his milestones and is the happiest baby.

    How is your son doing? I’m always worried about something happening or having to have another surgery. But right now I have a very healthy and happy baby/babies!

  24. Margaret Says:

    My son is now a week and 2 days old he is doing so well tolerating feeds moving all limbs and does suck a dode for short spells this is a positive behaviour which does give me encouragement that the level 3 bleed might not effect him at all. The unknown is just driving me mad. Was your son good apart from bleed when in hospital. When he had scan yesterday they said bleed still a level 3 no change at what stage did they say tour sons bleed had reserved?

  25. Margaret Says:

    Hi Faiza came across your post we are going through the same with our little boy born 30 weeks 3lbs 5oz and level 3 bleed. Doing well with feeds breathing and moving all limbs. Just wondering how your boy is now would love to hear if you have the time to reply thank you

  26. Jocelyn Says:

    How is your baby doing now? I hooe she is ok? I too have a 24 weel daughting right now in the nicu

  27. Jocelyn Says:

    How is your babyboy now? I have a 24 weel daughter in the nicu similar story

  28. Renee Says:

    My son is almost 2 and has poor head control (it has got better since he has been doing early steps and NICU rehabilitation) and is not sitting up as well. He has a mild brain bleed.. grade 1 or 2. I was told eventually he’ll walk and crawl. Slow growth. Therapy helps, but it does take time. Just pray & keep fighting.

  29. Betty Says:

    Hi all hope your baby’s are doing well my son was born at 25 weeks with grade 3 and 4 on the other side. doctors gave him 50% chance of surviving the grade 3 corrected itself and the 4 still there. They told me he will need a shunt and because he has a severe bleed he will be disabled and will have hydrocephalus. He was on the ventilator for a while can’t remember how long as I couldn’t process everything .was so heart broken they told me to take one day at a time but didn’t pay mind to it was just praying. Prayer is a powerful thing God is in control not doctors only god knows the plans he has for my son. My son is now 6 months 3 months corrected he is meeting his milestones so far he can hold his head up his reaching for things he follows objects around he smiles makes baby noise feeds on his own he came oxygen before we came home was in the neonatal for 16weeks neurosurgeon did an MRI on him they said he doesn’t need a shunt the fluid has stated circulating just fine and no sign of hydrocephalus his a happy baby will keep you updated when his 1 best of luck to you all

  30. Sallie mask Says:

    How did it turn out to be,,, my baby the same way but she at grade 3 she in nicu too

  31. Brooks Says:

    My daughter was born 24weeks.. she is a week and a day old, she has been doing fine, moving, tube feeling, the doctor told us that she has stage 3 brain bleed, they said if it continues they will have to put in a stint to drain the blood, I’m praying it drains on it on, they don’t think it is still bleeding, but they are concerned about the blood that’s on her brain now, they are montoring it every three days to see if it swells any, but so far no swelling!! I’m just nervous and don’t know what to expect!!! Any help or encouragement is welcomed… thanks…

  32. Jennifer Says:

    Hi Erica, I have a similar story. My daughter is a twin who also suffered TTTS. She is now 12 months old and was a 27 weeker. She had 2 bleeds stage 3 and 4. She is receiving PT, she hasn’t sat up on her own yet either. Feel free to msg me anytime.

  33. Catina Says:

    Please keep hope!! My daughter was born on 12/28/16 at 28 weeks 2 days weighing 2lbs and 2 oz. she developed bilateral grade 4 bleed with hydrocephalus. She did have to have a reservoir placed (which she still has) to allow the doctors to tap the fluid.

    She is now 7 months on the 28th (4 months corrected) and weighs 13lbs. She has surpassed all of her corrected age milestones and hitting most of her actual age milestones. The doctors are all amazed with her progress…and so are we! It is such a hard journey and I know we still have a long way to go. Just stay strong momma and I will be praying for you and your baby!

  34. Charlynne White Says:

    Thank God for your precious life. I had my Lil girl FAITH @24 weeks she is now 15 days old with grade 4 on 1 side and new grade 3 on other. She is a fiesty Lil momma lol. She has infection and hole in stomach they had to place a drain in stomach to get stool out and keep from getting into her system. But she breaths very well on 22% ventilation. I’m keeping faith as well I trust God to work a miracle I know he will. Continue to hold on to your faith in him

  35. Charlynne White Says:

    I thank God glory!! That’s a marvelous testimony God definitely had the last word. My baby girl was 1lb 8oz has level 4 bleed also and 3 on other side. I’m. Trusting God she is 15 days old

  36. Penny sessions Says:

    I have a 6year old grandson . At 6month rush to hospital for seizure had 3brain bleed surgery now had angry issue and violent out burst

  37. Nadia Says:

    Keep hope!! My son was born at 24 weeks weighing 1lbs 10oz. He was diagnosed with a bilateral grade 3 bleed 10 days after birth. Assumed to be caused from the stress on the ventilator. He spent 4 months in the NICU came home 2 weeks after his original due date. He is now 2.5 years old and doing well! He does tip toe from time to time and is 18% delayed with his fine motor skills. He receives therapy once a week. His therapist is very positive about his outcome. He recently just skipped a class ahead in his daycare! Now being taught with kids who are slightly older than him. He is very active and a very happy kid, loves to run and sing along to music. It’s a rough road but everything will be ok. Keep hope and pray

  38. JOANNA Says:

    Never give up and continue to have faith, even if sometime’s you may not understand why thing’s happen. My son was born at 25weeks and was in the NICU for 5months. He has a grade 1 and 3 brain bleed. He now has a shunt, which has been working, even though he had to get a revishing of the shunt at 3yrs old, due to malfunction of the shunt. He now is 4yrs old and he’s barely starting to walk (but Thank God he’s getting it) He neglects his left side since he has the grade 3 brain bleed on his right side. Even after everything he’s been through, he’s such a happy baby boy, always with a smile on his face. Thing’s can be hard at time’s but just remember to never give up. I’ll be praying for each y’all, that is going through the same situation as I am. Remember to never lose hope!

  39. Crystal Says:

    My daughter also had bleeding in the brain she has some delays but so far shes improved so so much they told me she wouldnt be doing alot of things and by the grace of god she has learned and accomplished so much so have faith in god i talk to god everyday. Hes there for all of us. Godbless you and i wish the best for you and your baby

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