Brain Bleeds

Christian had a grade III and a grade IV. He had a shunt placed because he had to have his reservoir removed because of menigitis. The only set back I can see right now is that he avoids eye contact. He moves very well, hates tummy time unless it is on his terms and makes all kinds of different verbal sounds. He is five months actual and two months adjusted. We have been told to expect developmental issues and or CP. Did any of you have a baby that also had a brain bleed and is hitting all milestones? How about CP?

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I have twins born at 24 weeks. They are now 15months, 11months adjusted. My one twin had a brain bleed I, while my other child was born code blue and has possibly PVL. First of all I have learned by talking to other NICU graduates that these brain bleeds don't always mean anything ( I also think it depends on where the bleed is). They obviously don't dignosed until 2. With my one child (brain bleed 1), we were told he would have CP. Well, guess what he is doing wonderful and have almost caught up. We are little delayed, but we will get there. My other son, most likely will have CP. There is so much research and information out there. For example, get involoved w/your EI (early intervention). They have PT, OT, and Speech. They are even going to start water therapy. We also found a good neurologist we like (that I feel is important). My one child will get botox shots. There is a lot of equipment out there. When they get older, horse back riding (infact if your child is dignosed it is paid for by insurance). I guess what I am saying is....think positive. There is so much out there. Don't get me wrong IT HURTS and lots of tears are shed. But I currently feeling I am doing everything I can do for my children and I am sure you will do the same for your child.

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I have twins who were born at 26 weeks and are now about 13 months actual, 10 months adjusted. My daughter had a very rough start (the NICU nurses later told me that they did not expect her to make it) and had a level II brain bleed. She had brain ultrasounds every Monday, and the first couple weeks the brain bleed kept getting bigger until it was a level III. By the time we left the NICU it was resolving. Right now she is a very petite 13 month old. She has such a spunky personality and is crawling all over the place and babbles endlessly. She is right on target for her adjusted age and the doctors don't seem to think she will have any major problems. Her twin brother did not have a brain bleed in the hospital but, ironically, is causing the doctors a little bit more concern. He is more advanced than his sister but is showing some left side assymetries and likes to tiptoe. We have an Early On therapist that comes to our house as well as weekly visits to the children's hospital for physical therapy - our therapists don't seem very concerned about either child. However, I really wanted to get both of them into weekly therapy. I hope this helps.

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One more thing, my daughter really likes to take her own time doing things. She HATED tummy time and seemed to forget how to roll over. About 1.5 months ago she was not moving at all. Then all of a sudden, she started sitting up and just took off crawling. She's very stubborn, and like your child, likes to do things at her own time. But eventually they will get there!

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My 26 weeker had a grade 4 bleed on the left side at birth. We had a terrible NICU Dr. who told us he had a bleed and that he will have disabilities!! I cried and cried and lost sleep with worry. But...the damage had been done already. My son had Early Intervention, called Babies Can't Wait in our state, and has PT and OT once a week. He is 11 acutal, 8 adjusted. He is doing great and hitting almost all of his milestones. He isn't crawling yet, but gets up on all fours and rocks, so it is near. CP has been talked about and it is a possibility becuase his hamstrings are very tight. Get help early on and ask lots of questions. My son loved tummy time and is a tummy sleeper. They are telling me his right eye is stronger than his left eye, so we are patching the good eye twice a day to strengthen the bad eye. He just had surgery to correct it from turning inward also. Just keep working with your little one and get help early.

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Gracie had a Level 3 that was later rediagnosed as level 4 with PVL. I think that this was the most devistating news I received while in the NICU. It was the one time where I couldn't help saying why me, why her, why us. Our primary nurse was off when we found out - later when she returned and had seen the films, she said that she would have the Neonatologist who does our NICU follow up clinic look at them. When he did - he told us that while nothing is ever 100% certain, he was fairly confident that the issues from the bleed and PVL would be pretty minor if any. CP was a risk but once we went to our four month corrected follow up visit, he was able to tell us that they were very certain that she didn't have CP.

Not a day goes by that I don't worry about that little cyst on my babies brain but if you could see her now - you would never know. Yesterday was her 1 year corrected birthday. She babbles constantly, is almost walking and it is almost like you can see the wheels spinning in her head.

Babies brains are still developing and many compensate for the bleeds and PVL's as they develop so one might never know that there was ever any issue.

If you are not doing so already, get the process going with the EI program in your area and if you have the opportunity to, go to the NICU follow up appointments with the specialists that have seen these things over and over. This way you will be well on your way to a solution before you ever see any problems if there are any.

Also - don't worry too much about the eye contact and the tummy time. My daughter did the same things - I think they are just phases.

Good luck

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Kellar was a 26 wkr that had bilateral grade 3 ivh as well as a cerebellum bleed. While Kellar would make eye contact he however wasn't very good at tracking objects but after a trip to the pedi opthlamologist we were told that he shouldn't be tracking just yet and w/in a few months he was a champ. Dr's are wonderful but they don't know everything, they can tell you outcomes of what they have seen, what the norm may be, what statistics show but not ALL outcomes are going to fall under those, some babies w/no brain bleeds end up with greater disabilities than those w/severe brain bleeds. We were told on day 2 to possibly discuss taking Kellar off of support, if you could see my 2 year old ( he just turned 2 yesterday ) now you would realize that dr's do the best they can w/all they know but if I had listened to them I would not have my smart, charming wonderful toddler..Kellar is walking, talking ( still working on this one though ) but most importantly he is the love and light of my life..I agree with the others about getting some therapys for your little one..

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My son was having brain bleed grade 2 with enlarged ventricle which doctor worried would develop hydrochepalus, off course this made me devastated but later requires no shunt but end up with cp, moderate.. he had about more than 50% delays.. he's now 15 month old/ 1 year adjusted, but now can sit up and sit with support.. I was told mostly brain bleed end up with cp but it's not the end of the world.. i'd suggest instead of doing conventional treatment (PT,OT,ST) please try alternative therapy, like MME or similar.. it'd be very helpfull bcs each methods of therapy works & fixed in different areas of the problem & cp must be treated holistic.. PT will teach him the how to's & other therapy would help regenerating the damage cells. what happens to my son is, besides PT he gets static electric therapy which i think it really really make significant improvement.. he was on electric therapy for about 3 months & his spasticity reduce almost 80% which causes he can sit up, roll over better, improvement in head control & social skills & interactivity.. I was told that moderate stage it'll take 'times' to even get to a milder stage of spasticity, and this is a miracle..

he had very poor eye contact & interaction before he started this therapy, lack of will to grab objects.. but now he can concentrate long to watch cartoons, he can laugh at it once or twice, loves pictures & toys, grabs toys & mouthing it.. he loves observing people & surroundings, enjoy so much social plays & his strabismus resolved without any intervention.. mostly i can find that each of weeks he learn something new.. so, keep up work with your little one, and wish all the best for him..

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My 28 weeker had a grade II bleed, in addition to numerous other medical problems. In fact, we were told if he bleed was a grade IV that we should continue discontinuing care. Anyhow, he has done wonderfully. He is right on track with his gross and fine motor skills. He was diagnosed with a speech delay but he is quickly catching up with therapy. He has no signs of CP. He was diagnosed with macrocephaly and hydrocephalus around 18 mos, the assumption being that it was due to his bleed. He was monitored with serial head CTs and it was found to be stable at this point so he does not need a shunt. At 22 months, his neurologist said his diagnosis is arrested hydrocephalus meaning his head CT is not normal, he does have extra fluid, but his body has adjusted and is able to drain it without any intervention. He said while there continues to be a risk of learning differences as he gets older, he looks wonderful. Just like everyone else said, you just never know with these little guys. The benefit is that they still have so much growing to do - they can quickly replace damaged tissue. My son's medical team was very uncertain for his future but he proved everyone wrong! Hang in there, it's not always easy - I wish you the best!

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My son was a 27 weeker and had a brain bleed. He had an MRI and EEG done at 1 yrs of age and was told it's normal. At age 4 yrs old we found out he has PVL. We were concerened with mild CP as well. The PVL is brain damage due to lack of oxygen. The original neurologist lied about the MRI results. We got a new Neurologist and he's great.

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Is that picture of your twins??? Mine were 26 weekers and had TTTS. The donor, or smallest one was 1 lb 5 oz, and had grade III bleeds bilaterally.

I don't have a lot of time right now, but I had to write for you. So this will be brief, but hopefully will give you a fair picture.

My son coded from his PDA... he was down for about 45 minutes. His O2 sats were around 30% most of that time. The docs gave up on him and expected him to be "a vegetable". However, just as we were ready to let him go... his sats came up. He wasn't ready to give in, yet. So I fought to get him surgery asap, for the opening in his heart. They were reluctant to operate given his "neurological prognosis". In other words, they thought he would pass during the night and therefore would not live a life of pain. But I won the fight and the surgeon closed the hole two hours later and saved his life.

He is 6 now. Yes, 6 YEARS! No adjusted ages anymore, just his age. He is in kindergarten, is bright, intelligent, funny, and very, very sweet and loving. He is an inspiration to all of your children who have posted here before me.

For crying out loud, they hoped he would die...because they truly believed his life wasn't worth living. THEY WERE WRONG!!!! And sadly, they often are! I am a nurse and my hubby is a perinatologist. The first thing we learned in the medical profession is that there is NO exact answer. Everyone has the ability to break the rules. These babies, DO break the rules. They defy logic and are still developing. THERAPY is important and helps. Never give up! Your kids deserve it.

My son at 11 mos, weighed about 10 lbs, didn't roll over, and didn't coo. His identical twin was cruising furniture and babling. I thought that things might be for the worse. The neurologist was extremely concerned and insisted I bring him back in two weeks and schedule further testing to determine how significant his brain injuries were. But when I brought him back...

He almost fell off of his seat! My sons were both cruising furniture! He was rolling over, sitting up, and pulling himself up! He went from 0-90 in two weeks.

It was amazing.

My point is this. You will worry everyday, wish the days be gone wanting to know how he will turn out. (I did!!!!) But you are wishing away life. Enjoy every day, savor it. Never stop trying to give your kids every advantage, therapy, and opportunity for advancement, and embrace each milestone. No one knows how sick or healthy your child will be, only your child. Stay strong and keep your faith. Miracles happen. But don't give up hope, even if one doesn't happen for you. Tomorrow might be his day.

Life is a cycle. We do great, and then, not so great. My son has had obstacles. But what I saw happen, reassures me that despite setbacks, we can't give up! We tackle each new issue and conquer it the best way we can. AND we encourage him to set obtainable goals so he can learn that he can do whatever he puts his mind to.

I hope some of this has helped. If nothing more, than to let you know that even when it seems hopeless, it isn't.

God Bless!!!
Lori

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My daughter was born at 26 weeks. She is now 13 months, 9-1/2 adjusted. She had a grade III bleed on the left side and grade IV on the right. During our first meeting with the NICU doctor he told my husband and I to prepare for the worst. He said bleeds as severe as my daughters could mean that she wouldn't be able to survive off off the ventilator. Thank goodness he was wrong. She did survive and is doing wonderfully. She is beginning to crawl and has no problems, except for a little tightness in her left ankle! Her PT says she is right on track for her adjusted age, if not a little bit ahead.

The brain is an amazing organ. Parts of the brain unaffected by the bleed may be able to take over for the portions of the brain that were affected.

I'll keep you in my prayers!

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HI,
My nephew, Kei was a twin, who's sister passed less then 48 hrs after birth. They were born at exactly 24 weeks. He has now been home from the NICU for 2 1/2 months and during his stay was diagnosed with a grade IV bilateral bleed, which slowly began to resolve when he left the NICU. Today he is 6 1/2 mos, 3 adjusted and is doing really well! We are so amazed what a miracle he is. He has actually started to roll over!!!! He doesn't eat very well though. He also had Eye surgery before he left the hospital and the Opthamologist is VERY impressed with his recovery, BUT he too does not seem to make eye contact or focus. I noticed when I saw him last, that his eyes flutter when he is looking around, but once he stops looking side to side or up and down, then his eyes don't flutter?? I asked my sister (the mommy) about it, and she had not realized that they did that? So I'm not really sure what's going on with that. BUT, my sister said the Opthamologist and Kei's Pedi. told her that "you don't see with your eyes, you see with your brain". Which kind of worried my sister, but it's still to early to tell. So stay strong and we just have to sit back be pro-active and wait and see what God has in store. Please keep us posted.

Thanks...

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My grandbaby had a stage 4 brain bleed and is in a coma. The brain bleed occured 4 days ago and they took him off of the vent yesterday. He has been breathing on his own and has maintained his vitals for over 24 hrs, but is still in a coma. His eyes are still fixed and dilated and he shows no response. Has anyone had this type of experience with their baby and still had a recovery. Any help would be appreciated.

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With babies anything is possible. I hope he recovers soon.

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Anyone know of any alternatibve therapies for children at risk for CP? My twins were born at 26 weeks last christmas and my son had a large left side brain hemmorage so he is at risk for cp. He is alert and social. He moves all his limbs but his right side doesnt seem to move as much as the left side. I have him in doing the anat baniel method which is a alternative therapy which seems to be helping and early intervention is doing their evaluation on june 2. Anyone know of anything else I could be doing for him. They are 2m adjusted
melodi

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I was just curious if any of you who had babies with serious brain bleeds experienced your baby staying in a coma for over a week. It is somewhat discouraging that there has been no improvement during the past week. Am I being impatient by expecting some improvement in this short of a time?

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Please, have patience-- and don't make any decisions without many, many opinions. I lost one of my twin sons due to severe complications from pPROM, probably the least of which was a bilateral brain bleed. I'd give anything to have had to worry about therapy and all...

God bless our babies, our doctors, and our families.

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ok..sorry for being such a bother by posting questions, but I was curious if auntidee's nephew was in a coma after his bilateral grade four brain bleeds. It has been over 2 weeks with my grandbaby in a coma and no movement and the docs say they that his recovery is not encouraging. Do most babies wake up by now?

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Hi Nancy,
You know when Kei was born they instantly had told us that he had a brain bleed (IVH) and he had heart surgery (PDA) 2 weeks after her was born with many, many other complications. Kei was sedated for about the first 2 months of his life. When I say sedated I mean they had him on heavy sedation meds, of which within the 2 months they would take him off of his sedation and put him back on depending on the issue he was having at the time. I don't necessarrily know if he was in a "coma" per say, I never heard that term being used. Just always sedated? Was your grandbaby born, then went into a coma or did his coma occur days/weeks after birth? All I know is that on several occassions the doctors and nurses discouraged by sister from keeping her son on what they call his life support and I would just have to tell my sister that the decision to keep him on the hospital's life support is not up to them or us, but up to God and if he wanted to take Kei from us he will on his time not anyone elses. Kei is almost eight months (5 adjusted) and now weighs almost 9 pounds. He has already done what doctors said he would never be able to do. I know how frustrated you are with your grandbaby's situation and the doctors involved, but you absolutely have to follow your gut on what to do next. What was the doctors diagnosis for your grandbaby when he was born?

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In re babymagik's questions about alternative therapies for CP:

There are numerous things out there. We have not tried any of these yet, but I am thinking about it when my son gets a little older:

HBOT (hyperbaric oxygen therapy), hippotherapy (horses), pool therapy, intensive suit therapy http://www.therapies4kids.com/home.php?pid=5 for example, and cranio sacral therapy.

There are probably many others, but this is what comes to mind off the top of my head.

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