Trying to see the positives

Hello, this is my first post at this site.  My wife and I are in the process to adopt (13 months, 9 months corrected) and have been presented with an opportunity which we are very seriously considering, pending meeting his medical team which is quite extensive.  Let me give you the Cole's notes on his background.  He was born premature ( 24 weeks I believe and 3 lbs) without a pulse or signs of life.  He was revived, and was basically clinging to life.  His mother was using many substances during the pregnancy.  In addition it was discovered he had meningitis.  He fought through this and then suffered a bilateral grade 3/4 brain bleed.  He underwent surgery to have a shunt placed due to hydrocephalus.  He has developed craniosyntosis, and as it was explained to us, his skull formed too quickly and he now has a "ridge" that runs from the bridge of his nose to his forehead.  This requires a major reconstructive surgery to help the skull form properly.  This surgery is accompanied by several risk factors, and additional risks due to the presence of his shunt.  We met with his surgical team, and they could not give us allot of the answers we are seeking, as there are so many "unknown" factors at play.  One doctor was very insistent that Cerebral Palsy was extremely likely, and that due to the grade 3/4 bleed, it could be severe.  Now having said all this, we have met little "D" and have started bringing him home for visits.  We absolutely adore him, and if you didn't know his history, you would think he was a perfectly normal baby (9 months corrected) with a few exceptions.  He does not want to bare any weight on his legs, though if you force him he can.  He would rather lift his legs in the air than put them down and bare weight.  And he has a noticeably odd shaped head, which will be corrected by the surgery.  Now our concern is CP.  I guess I am looking for similar stories, and how things developed for your child towards the 2-3 year range when CP can be properly diagnosed.  Does the grade 3/4 bleed almost guarantee some form of CP as the doctor is telling us?  Or is this just the typical "worst case scenario" you get form doctors sometimes?  This little guy is absolutely amazing, and when you see what he has been through, he is quite a miracle, especially when you consider that it was recommended to "pull the plug" in his initial infancy.  He is a very happy baby, quick to smile and laugh, kicks, can hold toys, mimics sounds and words etc.  It is a huge decision for us, as we want to be sure we can handle what his life is going to look like.  Thanks for taking the time to read his story.

4 Replies

  • Hello, as my son was just diagnosed with grade 3/4 brain bleed, I have googled every site I can. VVikipedia states that only 15% of babies that are diagnosed with IVH do develop CP but there is no statistic on how many are grade 3/4. I too wish I had some other seeing eyeglass for the future but am determined that these miracles cant be sent here to suffer they must be here to shine!
  • In reply to KayJo:

    Hi! My baby girl was born at 39 weeks gestational with a level 4 brain bleed. Still to this day (8 weeks now) the specialist do not know how this happened! So far she has been hitting all of her milestones! Her neurologist has her on anti seizure meds to prevent her from hurting her brain even more just in case (she did have an eeg and that showed no signs of activity). Her neurosurgeon informed us that there is a chance that she could end up with some form of CP but they are not sure! As of right now it is a waiting game and I completely understand how you feel. Luckily babies brains tend to rewire themselves to make up for the damaged spots on the brain (everyone keeps informing my husband and myself of that). Just remember that CP has a wide arrange of severity (you have children that might have a little difficulty with fine and gross motor skills but are cognitively completely there and you have the most severe cases where it effects the whole body including the brain). He seems like he is cognitively there except with some gross motor skills that are concerning and that is why they have PT and OT.
  • In reply to KayJo:

    Thank you for sharing your story. I don't really have any advice for you, but just wishing you all the best!
  • That's a lot for you to take on-responsibility, surgeries, side effects of his mother's pregnancy and financial considerations. He'd be lucky to have you but consider the impact on your lives from his age now to at least 21, if not longer. He may need life-long support. Yes, it's hard to predict and he could surprise you and medical personnel (I keep telling that to a young mom who has a 3 yr. Old, 2yrs.+ corrected). Her MDs gave her bleak outlooks too soon, I thought, and her daughter is progressing well with supportive therapies. I think doctors cover themselves by giving all possible info. In case. It's hard to predict. I was supposed to be blind and/or brain damaged, was not, have 2 degrees+ and was a professional for 37 yrs. I'm fortunate my parents wanted me after waiting 11 yrs., 69 yrs. Ago. Give him a chance, rewards could be huge.