Looking for similar experiences...

Hello, this is my first post at this site, may have posted this in the wrong section so re-posting here.  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 just doesn't add up to what we are hearing from the doctors thus far.  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.

2 Replies

  • Hi!

    I am not sure if I can give you the answer you are looking for... but I can tell you about my experience with CP. My little one was a twenty six weeker born weighing one pound eleven ounces. She only had a grade one IVH. With only a few bumps in the road, her NICU stay went well. She came home and the doctors predicted she would catch up quickly and easily.

    She was home for a few months when I knew something was wrong. Since she did well in the NICU, no one had talked to us about CP. At six months old (actual) my baby hardly moved on her own. I

    I brought it up to the pediatrician and asked, "Do you think it's CP?" She said, "I think so but it's not my specialty. Let's wait and see what the specialist says."

    Like Lindsay said, there were so many questions. What does this mean for us? Do we need to plan for a wheel chair?

    As you've noted, they don't diagnose CP until babies are older. The specialist asked me, "What do you want me to do now?" I had read that early help makes a big difference. But, I didn't know how to help my baby. I said, "Tell me how we can help her right now." He prescribed PT, OT, and eventually speech. I also enrolled her in weekly music therapy.

    Within a few months, it was like a light switch had been flipped. She started to move. At the age of 18 months, she received her diagnosis of CP. She is almost three now. Most people can't tell that she has CP. One really has to look at the quality of her movements, the overflow, feel her tone, or notice her AFOs or SMOs (which she needs time to time while she grows) to notice that she has CP.

    She is speech delayed, feeding delayed, and fine motor delayed. Socially and cognitively she is ahead of her peers.

    I guess what I'm trying to say is that CP can mean A LOT of things. Every baby is different.

    Has it been easy? No. We have put in a great deal of work, love, hope, and mileage on our car. Has it been worth it? Absolutely.

    Good luck to you. I hope I've answered at least a tiny bit of what you wanted to know.
  • Welcome to Share:) Let me just say that I think you both are super wonderful people for considering adoption. It sounds like you've already started to bond with little "D" a bit. I don't have a child with CP, but I am a mom to a child with Special Needs. He was a preemie as well. He has services and we are seeing/hearing progress each and everyday. At times, I question those same things. Can we handle this? What if . . . ? How expensive . . . ? What next? What else? There certainly are things to consider for a child who might possibly need long-term care. Doctors don't know everything. They have to tell you worse-case scenario because they can't guarantee. Doctors cannot predict the potential of an individual. With loving care, patience, and encouragement I bet little "D" will flourish.

    Remember that even if this little one does get a CP diagnosis, it doesn't mean that he'll have cognitive delays. I am hoping that his caseworker is telling you about the services that are available to this little guy as he grows bigger. Here to listen anytime. If you have a chance, check out the blog on Disabilities by Barbara C. Her insight and information are spot on:)

    Thinking of you all,