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Preemies
Intro-brain injury
Hi ladies,
After lurking for a couple of weeks I decided to finally post . My ds was born at 28 wks 4 days after a high risk pregnancy. He has been in the NICU for 7 weeks now, and just last week after a routine head ultrasound doctors found that he suffered a brain injury called peri ventricular leukomalicia (affects motor skills). the neonatologist said that his injury is significant, but not severe and that he will be have limited use of his left side since injury is on his right side of the brain. My dh and i are devastated by the news and don't know what to do. The day we got the news the physical therapist wanted to let us know how well he did during their session earlier and was surprised by the findings as she stated that at this point he seems to be doing well, not favoring one side over the other, not stiff, etc.
My world is falling apart knowing that he will have difficulties in the future. I guess I was at peace with knowing that my preemie would be behind his peers, but now this changes everything.
Anyone else with the same or similar problem? I know doctors can't tell what to expect but my heart is breaking for him thinking that he will be special needs.
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Re: Intro-brain injury
Same here! And I agree that it's great that the PT thinks he is doing well...that is definitely positive news!
Congratulations on your son!
I know this is so so scary. I delivered twins at 24 wks and 6days. My daughter passed away at 3 days of age. 3 days after that we learned my son had a "significant" grade IV bleed on the right side of his brain. We were devestated to say the least. We struggled with do not resusitate order at one point which is so hard to even type at this point. I would cry before every US and MRI of his brain. He was left with some PVL as the bleed resolved.
Finn turned 2 in July. He is awesome. He has a diagnosis of left hemiplegic cerebral palsy meaning that his muscles are tight on his left side. He has been in early intervention since discharge and gets OT, PT and speech. He walked just after his 2nd birthday and while his gait is not perfect, its pretty good. He is now speaking in sentences and just got his speech therapy reduced to once a month. This morning he told me.....Mama, I want to watch the ginch peees. Or the Grinch, whatever. He knows his colors, letters and numbers and loves knock knock jokes and gets along with his daycare peers. If I sound like a pround mom..I am!
The hardest hardest thing is not knowing what the future holds. I use to always wish I had a crystal ball. Early therapy is the best and only thing you can do. Don't be afraid to push the docs and therapist and ask questions. Hang in there. I know how hard it is.
I am so sorry you are dealing with this. I know it is really difficult not knowing what your child's future is going to hold. It's not exactly the same situation, but my DS went through something similar. He went into cardiac arrest at 3 1/2 mths old due to his respiratory issues. It took them 30 minutes to resuscitate him and they weren't sure if he would even survive because of how long he had been deprived of oxygen. His organs started recovering over the next 24 hours, but they said he could still have major brain damage. Over the next few weeks, he was conscious but the neurologist didn't feel like he was making enough progress (not showing enough movement and alertness) and told us he may never live an independent life, may never crawl, walk, etc. We were devastated and scared for his future. Now at 15 months old, he still has delays but he has made tremendous progress with the help of his therapies (OT, PT, Speech/feeding, Special Instruction). He is still not fully crawling, but is able to sit on his own, roll around, do an "army crawl" and seems like he could crawl any day. He amazes me every day as he continues to do all of these things that the doctors said he would never do.
I am not saying all this to get your hopes up because I know that every baby and situation is different. I just wanted to let you know that at this point it's not always possible to predict just what his future will hold. As hard as it is, just try to stay positive and do everything you can for him (getting him therapies, etc).
Good luck!!!
Congrats on your son!
My daughter was born at 35 weeks but we found out she had both a small stroke (infarct) and a brain bleed at birth. Her bleed was in the tissue and not in the ventricals. She is now a year old. The one thing her neurologist said is that baby's brains are plastic and not one injury will be exactly like another. We started early intervention as soon as my daughter was home from the hospital. She is doing well, her biggest issue is eating, but overall she is doing well.
Thanks for sharing your dd story. My ds is close to being discharge and I'm wondering about early intervention for him, what kind of therapy did your dd need once she was home and how many times a week/month did she need?
I don't post here often but wanted to let you know that you are not alone. DS2 was born at 35wk, 5d and has spastic cerebral palsy. He also has PVL and his left side is also weaker (I consider his left arm/hand to be the weakest of the limbs). I can tell you that while my son tends to ignore his left hand, he does use it but more as a stabalizer (which we all use are non-dominant for stabilization purposes). He just turned 3 in early October and is actually doing really well. Yes he (my son) has physical issues but that seem to be only that.As far as favoring his right side, I didn't notice it until he was 6mos old. He was diagnosed with CP at just shy of 10mos.
I would try not to worry too much about it which I know is so much easier said then done. Get him in to EI, which I'm assuming he may already be in since a PT saw him, and work on things the therapists show you. The brain is amazing and as he gets older he just may not show physical issues or maybe only mild ones. You won't know until he gets a little older anyway. Getting news like this is always hard to swallow but in due time it will get easier to accept. It sounds like he is doing really well. Try and enjoy your son. Special needs or not, he is still a blessing and will still be an absolute joy in your life.
I also 2nd visiting the special needs board. :-)