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.

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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71 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 (http://www.shareyourstory.org/) 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.
    ALL YOU MOMS HANG IN THERE.
    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 Askus@marchofdimes.com. 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?

    Thanks,

  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 (http://www.shareyourstory.org/) 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. (http://www.shareyourstory.org/) If you tell your story there, people will reply to you.

    Early intervention services (http://nichcy.org/babies/overview) 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: http://www.shareyourstory.org/

    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: http://www.shareyourstory.org/. 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,
    Lindsay

  21. Sarah Says:

    Hi

    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:

    Hello.
    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 (http://www.shareyourstory.org/) 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. http://share.marchofdimes.com/

  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. http://share.marchofdimes.com/#_DC_Tab=recentlyactive

    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.
    http://share.marchofdimes.com/ 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 ivh..today 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 ..my 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. gabybzn89@gmail.com 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. http://share.marchofdimes.com/ 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

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