Hello there!

Jamie - posted on 05/18/2009 ( 11 moms have responded )

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It's been a while since I've sent anything out, and found out today that I have quite a few new members to this community. lol So first let me say thank you and welcome to our new members! :D



Well the newest news in my life is that we just celebrated Leroy's first birthday! Yay! We had a nice party to celebrate his first year of nothing but success! He started walking ahead of schedule and every other milestone was on time, if not early, so we decided to celebrate with all our friends and family. It was wonderful!



Since there hasn't been too much interaction on here, I would like to get something started. I would like to have you all share your stories. I know there are people on here who have not had this particular experience, but for those of you who did have children that had a stroke while still in utero, I would like it if you would share your story. You can get as detailed as you would like, letting us all know how you discovered your child had a stroke, how old they are, what kind of developmental issues they have or may have, and anything else you would want to include. I thought this would be a nice way for everyone to get an understanding of what this is about, as well as being able to get more of a feel for how different each situation is. Though Leroy is doing very well and we don't forsee any major problems, I know there are children that will have difficulties in speech, function, walking, and many other areas. So if you have a story, please share it with us all...it will help us learn more and get a feel for this condition.



Also, don't forget to feel free to post links on this community message board that gives info about this condition. I want to help people understand what happens and what can cause this (tho in most cases there is no reason), so if you find a website that I haven't, feel free to put it in a message on the message board.



Thank you all and I hope we get some people talkin on here! :D



Jamie Wilson

11 Comments

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Cheryl - posted on 05/31/2014

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hi everyone, my little girl was born 18/01/2011 and a few hours after delivery she started taking seizures, they took her to scbu and after mri scans and more the said she had taking a stroke.... it was the left hand side that was damaged and what damage was done can not be repaired, it was her learning and emotions that were damaged... shes 3 and 5 months now and am really looking to hear other peoples storys as am so confused just now as her behaviour is really bad also she really doesn't understand simple instructions and her speech is delayed, we r going to clinics to see whats going on ... but im seeing symtoms of either autism or adhd but more adhd anyone else having simaler problems? I just feel lonely as I have not met anyone that can understand what im feeling... thank u xxx

Sara - posted on 11/08/2013

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Hi I am new and my son is now 7 he suffered a stroke at birth he is 2 year old in 7 year body we are having some help throw are school he goes too he also has very little word mostly food. we were told he would not walk intell he 7 but he started walking at 3 he running jumping and hopping now but that been alot of work with are therapist help he can barely feed him selves so we have to still help feed him we have to change him yet and now I wonder why I stopped having kids. I am glad for are Joe but he needs alot of help we were getting help from ssi but now they have cut us off ever thing we were getting Medicaid but they cut us off do to my husband makes to much money and I am a stay at home mom now since I have health problems too so if any one nows were we can get help that would be great because buying diapers cost us over 100 dollars a month and I just don't have that kind of money with are other bills and my medical bills to if you have questions for me let me know I would be glad to help in any way I can thanks
thanks for listing to stressed out mom
sara

Tosha - posted on 02/13/2013

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I am new to community and would love to tell my story. I had my son on Feb 21, 2009 and hours later my husband noticed that something wasn't right. We called in a nurse and she rushed him (my son) to the nursery, where he was taken to a local ICU. He was having seizures on the left side of his body. MRI proved a stroke, the doctors believed it happened during delivery, I however know it was before. He was treated with Keppra for the seizures and seen by a Neurologist until he was released at 2 years old. Today he is normal, even Left Handed!!! (The damage was done to his right hemisphere for motor skills) The only problem we face now is Speech. We noticed a little delay and he is seeing a Speech Therapist. Today she used the word Aphasia. A little strange I thought. Anyone else have similar problems with speech? And I am so happy to hear of something like this to make me feel like I am not alone!

User - posted on 12/25/2012

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Thank you all for your stories. I am new to the board and my son too is a stroke survivor, we found out at 5 months and have since started PT and OT. I would love to hear updates on all of your little ones. Thank you!

User - posted on 05/10/2011

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My son is 8 months old and suffered a stroke in utero in the 1st trimester. The weird thing is they didn't mention anything abnormal during the "big" ultrasound that I had around 20 weeks. They said everything looked normal. So my pregnancy was completely normal, my delivery was completely normal. And my son seemed perfectly healthy. Around 3 months of age we noticed that he really wasn't looking around and seeing properly. So we took him to a specialist and got the diagnosis of optic nerve hypoplasia (underdeveloped optic nerves). He is likely to have some kind of permanent, non-correctable visual impairment due to this. Because this condition is acutally a syndrome that can have many other components they did an MRI also at 3 months and discovered that he had an enlarged left ventricle in his brain and that much of the matter on that side was damaged. Because optic nerves develop by the end of the 1st trimester they said the stroke was likely in the 1st trimester and the cause of the optic nerve problem as well. Needless to say, we were pretty shocked that we knew NOTHING about this the entire pregnancy or the first 3 months of his life. So far he has right side weakness (mostly in his hand), isn't rolling over yet but can sit well and is finally starting to see things (not much, but some and it should improve). Looking forward to hearing all the information that other mommies in this situation can offer. Thanks!

Angela - posted on 05/02/2011

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Hello! My daughter, Alice was diagnosed with an in utero stroke, IUGR, and had extreme thrombocytopenia(very low plattelet count) The only thing they can attribute was I had Pre-eclampsia during pregnancy. Iwas induced at 37 weeks due to high blood pressures so she was full term, but weighed 4lb 4oz. They did a placenta study and it wasn't in great shape... anyway, we spent 32 days in NICU... her brain lesion is on her left occipital lobe- our biggest struggle so far is eating! She had to have a Gtube placed because she just won't eat much. She is now 3 months old and I give her a 3 oz bottle- she will nipple about 1 oz on a good try and then it's a fight to get anymore by mouth. She has mild reflux and is on Pepcid- but we don't really understand this struggle with eating. They had no idea of any problems until after she was born, luckily because of her other problems they checked her thoroughly and found the stroke had occurred. At least this way we got her in therapy right away. Her last EEG was still showing abnormal so she's on Phenobarbitol just in case, but she has another EEG in 3 mos so we're hoping it comes out ok and she can get off that drug. I'm always anxious to read stories because it's just not something out there... I try to do research online, but you don't find tons of good information, not only that but every stroke and every child is different anyway- so I know I just need to sit tight and do all I can for my wonderful little girl. The unknown is the hardest part! Thanks for listening- I am glad to find a group that knows what we're going through!

Ashley - posted on 02/04/2011

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hello everybody...

I am currently 24 weeks pregnant. thus far one of the specialists thinks our unborn child has had an in-utero stroke. we wont know for certain until he is here. they are certain that parts of his brain did not develop at all.....

Kimberley - posted on 05/13/2010

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Hi, I joined a while back but being kinda shy I've just been lurking on everyone else's stories. I've related to much of what is written here.... allow me to share...

Our youngest daughter suffered a stroke in utero in my first trimester. At 19 weeks of pregnancy we were sent to our local children's hospital to hear some grim news.

For the duration of the pregnancy we were faced with many diagnoses from spina bifida to hemiplegalencephally (I know the spelling of this must be wrong ~ but it was certainly as bad as it sounds!). We were followed closely by a high risk team. It wasn't until our Devynn was born that our Neuro found that she'd had a stroke. The reason for so many diagnoses was that the area that was damaged by the stroke was presenting itself as fluid on the brain when in fact her brain had only developed 3/4 and the fluid was actually filling the void.

We were warned very early on that Devynn may have some mild to severe developemental delays etc.. but we really just had to take her health day by day.

Devynn's eyes would constantly bounce for the first 7 months of her life.. at about a year of age Devynn took her first seizure. The first of many that soon lead to an additional diagnoses of Epilepsy. At 18 months Devynn was just beginning to show signs that she may walk. She still wasn't talking. With the help of many therapies it wan't long before we had to pick up the pace because she turned into a little tazmanian devil :) ... ahhh.. I could go on forever with the many wonderful milestones she has hurdled. We have 3 other children older than our Devynn...It's truly an amazing thing to watch your child reach a milestone but I must admit with Devynn, even the tiniest milestones had my husband and I crying tears of joy!

Devynn's seizures are extreme, at times lasting anywhere from 2-3 minutes to 3 1/2 hrs. Today, her seizures are being controlled with Clobazam (it's working for now).



Devynn is four now. She has diagnoses of stroke in utero, epilepsy, cerebral palsy (mild). She is doing wonderful this point. Far exceeding all expectations!

We've enrolled her in kindergarten for September and she is soooooooooooo ready :)

(..not so sure we are though..lol)



I apologize if my response seems very jumbled.. it's been a long bumpy ride. I'd be happy to do my best answering any questions.



Kimberley Cameron :)



I also want to add that at around 17 months old, it was discovered that Devynn had a folate deficiency it's linked to homocysteine levels which could have attributed to the cause of her stroke. This deficiency is apparently heritary and can possibly leave her prone to more strokes. She has since been on a suppliment of 1mgs of folic acid once a day.

* * you may want to ask for a homozygosity for MTHFR thermolable variant > homocysteine.

Allison - posted on 01/29/2010

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Just found this group and am just figuring things out.



My youngest son Abraham, so far youngest of 6, had a stroke at 35 weeks gestation. It was undetected until he was born at Jan 2008. We found it because of his birth, he was a meconium baby and it was bad enough to air lift him away to a higher level NICU. His apgars were 0 and 2. There he had a seizure and after that they did a MRI and found the brain damage. I was just happy to have him alive. I know how that may sound, but, he was my child and I wanted him even with all his problems.

When I was finally able to get to him, he was not nippling or making urine well. They were unsure of what problems he was going to have and made us no promises. While at the NICU I had a chance to meet other moms, whose babies had had a stroke in utero, it was more common than I wanted to think. However I found out that my baby was very high functioning. He was already breathing on his own with out any setbacks, at least by the time I was able to get to him. Everyone warned me that being in the NICU was a dance and that steps you took forward one day, you could loose the next. Just being in the NICU was trying and traumatic for me.



Anyway it seemed that once I was able to give my baby b'milk things started picking up. He made the strides that the head ped wanted to see, and let me take Abe home just 4 days later. I was happy and scared all at the same time. I was afraid of ending back there.



However here we are 2 years later and honestly no one can tell that he has had a stroke or even brain damage. He is a 2 on the scale of 1-10 that they gave me. Abe has made strides and is thriving. So much so that the clinic from the NICU had canceled some follow up apts.



The one thing I have trouble with is letting the 3 youngest boys wrestle. I assume that Abe will of course want to play full contact sports. He is the roughest of the boys and tends to get the better of his 3 year old brother.

Jamie - posted on 05/31/2009

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Hi Dawn!



I'm so happy you joined our lil community, and even happier that you shared your story with us! :) I know this is a condition that not many people have even heard of; we didn't even know it was possible until it happened to us.

With Leroy, the doc's told us that there was no cause for it- that it's just something that happens for no apparent reason, and that there was nothing we could have done to prevent it. I'm just wondering, was there any circumstance during your pregnancy that the doc's may think have caused it? Accident or some other trauma to the belly? Other than you and myself, I only know of one other person who's child suffers from this condition, and her case is the same as mine-just happened for no reason. So this is why I'm asking, just to see if anyone has a case where they do know why their baby suffered the stroke. Leroy's neurologist, Dr. Lefond at Children's Hospital of Wisc in Milwaukee, said that 95% of the time there is no proof or cause of the stroke. She told us basically the only way they have a reason is when there is some type of trauma to the mother's belly i.e. some sort of auto accident, extreme blow to the belly, etc. I keep trying to find as much out about this as possible, but unfortunately there's not much on the internet about it. lol

I'm very glad to hear that your son is doing well with everything now! :) Knowing first hand what a scary experience it is to go through, I can also say I know the relief you must feel knowing that he's over coming all the challenges that have been laid ahead of him! He's obviously a very blessed child, and will get stronger the older he gets! (Physically, spiritually and emotionally! :)

I hope all continues to go well with your son and family. If you have anything else you want to add to this community, please feel free to do so. Any questions about anything, please never hesitate to ask! Thank you again for sharing with us!



Jamie

Dawn - posted on 05/21/2009

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Hi, I'm new here. My son is 8 years old and was diagnosed with hemiplegic CP at 2 months old. He had 3 focal seisures where he tightened up the left side of his body. Our doctor told us something wasn't right as infants do no have the capacity to spasm at that age. We were sent to a neurologist who diagnosed him with a stroke in-utero. He had left sided weakness(worse in arm than leg) and low tone in his lower lip and left side of tongue. We started therapies immediately. He did not roll, crawl, sit or scoot until he was 8 months. Then all of his milestones started one right after the other. He walked at 13 months, much to the surprise of everyone around him. He was released from the neuro at 3 1/2 yrs old. PT continued until he was 5 with occassional sessions needed for spasms(1-2 times/year). Speech continued until the end of last school year. His therapists always said he was a mild case but none the less, needed therapies. Today he is a healthy, happy child. We still have the occassional overuse issues, but we can take care of them at home.

Keep looking forward.

Dawn

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