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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162 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. 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.

  12. 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.

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