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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220 Responses to “Brain bleeds in preemies”

  1. Jenn Says:

    My daugther was born 24 weeks at 620 grams. She’s on her 2nd week now and foUnd our that she has grade 2 bleeding in her brain and got serious brain infection. This morning she have seizures and doctors are constantly monitoring her. Her level of infection shoot up from 7 to 100+. I really don’t know what to do but just to keep praying and trust all the Doctors advise. Praying she’ll get better.

  2. Sheena Says:

    Jenn,

    A baby in the NICU is rough! Very, very rough! Being on the other side of it though, I can tell you what may seem grim today can actually have the best outcome. You will learn just how strong you can be in there. You’ll also learn the incredible strength that teeny tiny baby has! My son was born at 32 weeks, weighing 1503 grams. If you read above he should not have had a bleed. On day 7 of our 45 day NICU experience we learned he had a grade 3 bleed on both sides of his brain. Day 8 we learned he may have bacterial meningitis. Day 9 was 12 hours to place a PICC line, and day 10 was possible seizures. That was hell on earth! Today he is a beautiful, healthy 3 year old that is developing perfectly. Back then I struggled so much to just trust he would be OK. If you get to that place just know its very possible. Keep praying (I will too), keep trusting the doctors, but ask all the questions you need to understand, and just know that she can push through. Take care of yourself along the way! I know all you are concerned with is her well being, but make sure you are sleeping and eating too! If she is stable its OK to go home to rest (I really struggled with that). You should be able to call and check on her anytime. I ended up with PTSD after we got home. Who would have thought! Its that rough of an experience. Just breath and take it one day at a time. The NICU is 1 step forward and 2 steps back! Lots of prayers for baby girl’s recovery!

  3. Devoira Davis Says:

    Our preschooler(former 30weeker) had a grade 1 IVH that we weren’t even told about until the day of discharge and so we thought nothing of it. Fast forward to now she is really struggling with things like tracing her name, wiping, answering questions(she can do simple questions like what’s your favorite color), holding a utensil. Her gate is still off and she is struggling so bad in pre-K. I feel horrible for her cause she cries a lot and states she is trying but can’t do it. Is there anyone who can help point me in the right direction to getting help? I was told by five she’d be out of the woods with a lot of this stuff but she just isn’t and I want to help her as much as I can. No one really knows the extent that prematurity reaches and maybe other preemies have done just fine, but ours is struggling and we truly believe it’s because of this bleeding that occurred.

  4. Sara Says:

    Hi Devoira. If you have concerns about your daughter’s development, make sure you talk to her health care provider. News Moms Need also has a series of posts on delays and disabilities. You can see the table of contents here: http://newsmomsneed.marchofdimes.org/?p=17219. Hopefully you can find some helpful information.

    If you have additional questions, you can always email us at AskUs@marchofdimes.org.

  5. Jen Says:

    Devoira, I just came on to find out about brain bleeds in premature babies. I just took my 7yr old daughter (she is a 28weeker) to a developmental neurologist today bc she is struggling in school. We delayed starting her in K bc we felt she needed an extra year and her teachers agreed. So she is 7.5yrs in 1st grade and is one of the lowest academically in her grade. She is on an iep and gets lots of help but still struggles especially in reading. The doctor brought up her grade 1 brain bleed and ordered an mri for her. I don’t know what to think about it all.

  6. Jessica Says:

    My daughter was born at 29 weeks she had a grade 3 & 4 bleed… I was told all the worst things that could happen, she would have cerebral palsy, that she would need a permanent shunt. Well she is 18 Months now and we just got cleared by her neurosurgeon, she does NOT need a permanent shunt. && the only issue she has is extra tone on her left side. Which causes her left hand and foot to be tense. Something she will learn how to relax. She did have a temp shunt put in at a week old to drain that fluid off her brain and I can not stress how thankful I am for that. If we wouldn’t have don’t the temp shunt I def think she would have had more issues. Yes these preemie babies are fragile but they are resilient. They can heal themselves. Prayers for all of your babies!!

  7. Cyndy Says:

    If anyone could reach out to me, to offer some encouragement. My daughter was born at 34 weeks, with a grade 3 IVH on the left side of her brain. She has subtle cerebral palsey on the right side of her body but it does affect her, she is right now 17 months and is in the early stages of beginning to walk. Neurologist has also ordered speech therapy on top already getting physical and occupational therapy. I would just like to more or less how someone else has “weathered” these challenges it’s just hard when not any body that I know has ever been in my shoes, not too many ppl to talk to. Thanks in advance.

  8. Cait Says:

    Hello everyone. I’d love to share some encouragement for you all. My name is Caitlin and I am a NICU Graduate. I was born 31 years ago at Albany Medical Center and was born at 26 weeks. I weighed 2lbs 2oz and only given 10% chance of survival. At the time I had a 3 degree brain bleed on my left side and was told on the 5th day that I was not going to make it through the night. My parents had a priest come in and baptize me, expecting to come the next morning and I would have passed. Miraculously I was still there, fighting. Fast forward to several other issues, and leaving the hospital 3 months later at a hefty 4 lbs. The only ‘disorder’ I have is a slight learning disability. I have a Masters in Library and Information Science and was able to carry my own 2 children to 38 weeks with no problems. I hope that despite the roller coaster of emotion you all are going through to be a light of hope to you all. You have little fighters and prayers to everyone! If you have any concern/questions please email me 🙂 <3

  9. Leah Says:

    My son was born at 30 weeks he had high blood pressure high heart rate suspected scepticaemia and was in intensive care for 1 month before moving back and forth between hd and int for another month. he suffered a grade 3/4 bilateral bleed on day three. He had numerous bradycardias and 3 blood transfusions he had seizures and I can tell you. I felt like my life wasn’t worth living because I was so helpless for our baby. I cried every minute of every day I was ill, I couldn’t eat sleep and actually found myself walking out of the hospital not even knowing how I got there. We stayed by his side day and night. He was untibated then Cpap the intubated, he was in billy Rubin lights he was tube fed for what seemed an eternity and even ended up back on oxygen in special care. A junior dr said at one point that if our baby was to make he would be dead behind the eyes!! So there is little wonder why we or I was like I was.

    Our gorgeous little boy is now two. He is amazing. He has Physio OT speech therapy. Although he isn’t walking but he is really trying and I spend my days walking him around everywhere he is cheeky he has a gorgeous personality he isn’t talking but I did a sign course and he’s already picked up ten signs. He is making lots of sounds though so I’m optimistic about that happening. He has just been given a little splint to help balance him. All I can say is, yes it’s the most upsetting thing in the world, yes it’s not what we wanted for our babies, no I definitely cannot accepted it but I will definitely make sure my baby explores the world however he chooses and if need to be there with him then I will be. You might not think this now but you will get stronger. I am an extremely emotional person and I think a lot but I am actually stronger to deal with this now and he’s amazing. He took four steps on his own last week. It’s not as bad as your mind makes it because our babies have their own uniqueness and if you know in your heart that they’re happy and you see them smile then we have to do the same. There is hope. Not knowing is bad and we’re still going through that but I honestly believe that our little preemies who have had a bleed just need lots of time love and support. We can absolutely do this!!! X x x

  10. Priya Says:

    Hi,
    My daughter was born 24 weeker at 1 lbs 10oz and had low grade IVH. We came out of NICU after 4 months. It was a roller coaster but she was great through it. She has done good otherwise except for speech delay. She is not talking yet although cognitively pretty advanced. Has anyone experienced this? Could this be related to the brain bleed. She is 2.5 years now.

  11. Dominique Clark Says:

    Hi , I’m experiencing the same thing with my 24 weeker. He is 2.5 years still not walking or talking. It is def related to the brain bleed .

  12. Tammy Wooten Says:

    Thank you so much for your post. I have a grandson in NICU that was born last Saturday at 25 weeks, weighing 1 lb, 11 oz, and 13 inches long. He has an ultrasound on Thurs to check for brain bleeds, and I am a nervous wreck about it. He has actually done real well since he was born. He is super tiny, but super cute. I am a woman of great faith and totally believe that God is in the business of miracles. Our little guy is proof of that, but I am struggling with this test. I’m so glad that all is well with your little one ♡

  13. Flor Abad Says:

    Thanks for sharing, I am going througth it and is hard, I keep praying to God for my baby Raymond Amadeus.Your story gave more faith to keep being strong for him.

  14. Jorhe Says:

    How is baby doing now?

  15. Kelley Says:

    Hi I was wondering how your baby is now? My son is 2 weeks old has stage 4 on both sides.

  16. Debra Dean Says:

    My daughter had triplets, 3 boys, at 24 weeks. They all weighed less than 2 lbs. The oldest had a grade 4 brain bleed a few days after birth. He is now 11 years old and is in the 5th grade. He has mild cerebral palsy which has caused his right side to be weak. He is very smart and loves to sing and dance, and he can swim like a fish. He has a three wheel bike that he rides and plays softball on a team for children with handicaps called “A League of Our Own.” He walks with a mild limp, because he doesn’t pick up his right foot like he should unless reminded to. We also have to remind him to use his right hand. He is as normal as any other child except for this, which he gets therapy for 3 times a week. We were told all the horror stories that go along with preemie, but we never lost our faith. His two brothers have high functioning autism and are in the 5th grade also. They both can walk, talk, and play like their brother. They also play softball on the same team. They do not like loud noises and occasionally have meltdowns when they are mad, but we wouldn’t take anything for all these boys. They have taught us more than we can ever teach them. They are so brave and work so hard to better their health. They have all had therapy since they were small babies, but they all enjoy life, school, church, and love each other and their family. Never give up on your children. They are precious even when they may not be physically perfect.

  17. Monique Says:

    Hello Jessica, my name is Monique. I had a son last year at 25 weeks. He ended up having level 3 and 4 brain bleed. I have questions I would love to ask you. If don’t mind, would you email me.

  18. Anon Says:

    Just wanted to give you some hope during a difficult time. My son was a 25 weeker and just turned 2 last month. We spent a long 92 days in the NICU. The NICU journey is long & tiring and a nurse once told me the saying around there is “1 step forward, 2 steps back.” That couldn’t be more true. I tried to keep that in mind during our stay to keep our hopes high.

    My son is doing great but I will say the journey doesn’t stop there. We left the hospital with 9 different doctors & specialists and now work with different therapists for development & speech. It sounds like a lot, which it can be at times, but he’s worth it. He’s such a joy – a happy, sweet both with just some mild delays.

    Best of luck to your grandson.

  19. Sherri Says:

    My son was born at 25 1/2 weeks gestation. He was 1lb 15oz. He had grade 4 bleeds on both, right and left sides of his brain. He was on a ventilator and hospitalized for 3 1/2 months. He had hydrocephalus therefore a VP shunt was placed in his head to his stomach cavity before he came home. My son is now almost 15yrs old in 2 months. He is extremely smart. He doesn’t have cerebral palsy, mental retardation, or behavioral problems. He did have ADHD medication since kindergarten to assist with his focusing in class. He is a freshman in high school and makes straight A’s. I believe that he has grown out of his ADHD. He is very laid back and super intelligent. It’s ALL because of GOD!!! I owe it ALL to God’s grace and mercy. My son is a walking miracle. I thank God everyday for my baby. He is almost 6ft tall now. He does get very uptight about reaching deadlines and finishing his homework and projects early. He has made student of the month serveral times at his elementary and middle school (not high school yet).

  20. Miss D. Says:

    I haven’t been on this site in years and I’m so happy to read how far we’ve come with saving babies born with brain bleeds. My twins were born at 28 weeks and weighing only a pound each. T passed away before delivery and her sister had a grade four bleed. She fought a good fight for a month in a NICU but passed away as well. I check sites now and in hopes that others who have gone through this horrible experience have a better outcome. My thoughts and prayers go out to all of us who have little ones in this situation and wish you all the best.