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my sister's newborn had a stroke, please help.
she was born on monday, they don't know when the stroke happened, but it was pretty severe, i guess. anyone have experience with this or know of any kind of prognosis? She is having an MRI done right now and they will have more answers later, but I'm so devastated for her and don't know what to do or what to expect. The docs don't give too many answers, only say that it's good it was on the left side of her brain b/c a lot of times the right side will compensate. If you have any info on this or know where I can find good websites for info, please let me know. I'm at a loss. Please say a prayer for them.
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Re: my sister's newborn had a stroke, please help.
Since your niece is so young, it's really hard to say what her prognosis is going to be like. It's amazing how kids learn to compensate for areas where they have difficulty, so finding out what kind of services will be available to her (early intervention, private therapies, etc.) will be key. I do have to say I've worked with a couple of kids who had strokes either in utero or shortly after birth (one a year ago, and one is a current patient)...the kiddo I used to see had some mild gross/fine motor and language issues (the latter is where I came in), and my current patient has more gross and fine motor issues (he has right side weakness so balance can be difficult for some tasks, and he's not a huge fan of using his right hand but will if you make him) and more delayed expressive language skills but he's very bright (sometimes too smart for his own good :P) and busts out new words for me every week.
As I said, it's pretty much impossible to guess what your issues your niece may have down the line, but I wanted to give you a couple of examples of how things can go
My son didn't have a stoke but he was born with a brain abnormality. Part of the right side of his brain didn't develop while in utero. It is the part that controls your right side sensory. He is doing great! You would never know anything was wrong with him. He has retrained his brain to make up for the part that didn't develop.
Last night he was having some problems walking so I called the on call pedi neuro. She was talking to me about stroke (saying maybe that was DS problem but highly doubted it). Anyways, she said that a stroke in children is a lot different from an adult having one. A lot of times they can retrain their brains and depending on the severity of it they leave it alone. Our talk was quick and not a ton of detail b/c she was trying to figure out what was going on with DS. Hoping that things go well with your nephew.
First off, I am so sorry for your sister, she has the whole rollercoaster of the "wait and see" ahead of her.
My DS was born seemingly healthy, about 4 hours after birth he started having apnea spells which led to a CT scan which showed he had a severely swollen brain. Later that night he had an abnormal EEG. We were told that the brain injury occurred sometime during labor or the days leading up to it. We were discharged from the NICU with appointments w/a neurologist and our whole "wait and see" began. It was such a nightmare and we were devastated since I was not expecting any of that after a picture perfect pregnancy. Noah was at risk for cerebral palsy, seizures, delays, etc.
My miracle man turned 2 in November and has never had any delays, seizures or any other health issues. He is doing beyond well, so it is possible!
I read a few blogs of mom's whose little one's have had strokes:
babystrokesteps.blogspot.com
lovethatmax.blogspot.com
and I have a blog- parentdise.blogspot.com
best wishes!
My son also had a left-sided stroke that has affected his right side. He is very weak on his right side, but he is relearning to use that right side and is getting stronger and stronger with it through therapy. His stroke was at 8.5 months old, and at that time they couldn't tell us what our son was going to be like. He couldn't sit or roll or move hardly. It was very, very scary for us, but we just took it one day at a time and now our son is getting better and better every day (we have a host of other issues besides the stroke). Our therapist expects him to make pretty close to a full recovery, if not a total recovery.
I'll be keeping your sister and her baby in my prayers! Those first few days will be rough. Like the PP said, the hardest part is the unknown and the "wait and see" that begins with discharge. Let us know if she needs specific questions answered.
My son had a stroke (either in utero or at birth, no one knows) with severe damage to the left side of his brain. He stopped breathing, was resuscitated and then had severe seizures among other issues.
His MRI (at 5 days old) looked horrible and we were told it'd be a 'wait and see' game but to expect severe developmental delays and cerebral palsey.
Luckily, the left side of his brain seems to have 'taken over' quite well and while he has lots of OT and PT, sees lots of specialists, etc, he appears to be a healthy 4 month old who currently hits most milestones.
He's on anti-seizure meds, but we go in for a 2-hr EEG next week and might get to lose them. As for the future, we continue to 'wait and see' but are optimistic.
The first 2 weeks in the NICU were the worst, we didn't know if he'd even survive, or how severe the damage would be. Your family will be in my prayers and feel free to email if your sister needs someone to give her hope. I can't express in words how bleak my son's outlook was 3.5 months ago and how miraculously well he is doing now.
my email is: paula.wedding@gmail.com