My baby had a stroke in utero
, Jun 21 2011 01:02 PM
11 replies to this topic
Posted 21 June 2011 - 01:02 PM
Not many people know that babies can have strokes, even unborn babies.
This is something neither my husband nor myself knew, or really thought about, until we were faced with the reality that our daughter had a stroke in utero.
I am writing this to raise awareness about paediatric stroke. In doing so, I hope to highlight the importance and trusting your instincts and seeking answers.
I guess what triggered us to think that something wasn't quite right was that our daughter seemed to be developing a very strong preference for her right hand.
She was becoming increasingly difficult to dress through her left arm as she would not stretch out her left side the same way that she would her right, and she always keeps her thumb tucked under her clenched little fingers.
I had people telling me "it's fine, don't worry, that's normal" and part of me wanted to believe them, but as a mother I knew something wasn't right.
Read the full story here then leave a message below for Michelle and Rose:http://www.essentialbaby.com.au/life-style...0621-1gcjr.html
Posted 21 June 2011 - 01:34 PM
Thank you for sharing your story. What a brave and strong little girl you have. I hope she continues to come along in leaps and bounds with her treatment. I also hope that you are getting all the support and love that you need too. I know all too well that often the parents and their struggle is forgotten
Posted 21 June 2011 - 02:05 PM
I know all too well the feelings you have been through and the questions you have asked yourself. I had the exact thoughts, worries and concerns 10 years ago when my child was born. Things were not evident at birth although he did have a very large hemangioma on his left temple which I'm told had no effect on him so I'm unsure where this came into it. It wasnt until he was a few months old and we noticed differences on his right side similar to what you have noticed with Rose. Despite doctors telling me he was fine, I still had concerns. He didnt walk until he was 17 months old which isnt too bad in the grand scheme of things but had a noticeable limp. Still noone else seemed concerned. He was developing otherwise at a normal pace. Speech was fine.
We plodded along until he was 4 and in swimming lessons, one day the teacher said he was being lazy and not using his right arm to the full extension, it was only going to his shoulder (hard to explain). After watching him I decided to seek further advice and saw a paediatrician who after many tests diagnosed him with mild Cerebral Palsy, he has a right hemiplegia.
This is when I started to question everything in my pregnancy, what had I done, why did he have to be put through this. What does this mean for him? The tests told me he had a stroke inutero. Scary stuff to be told isnt it?
We have had physio, OT and as he got a little older he did require speech therapy for a time. He also wears an AFO on his right foot.
I am happy to say though most people dont realise he has CP unless it is pointed out to them or they ask about his AFO.
He is doing quite well in school and just today represented his school in a multicultural speaking festival. Not bad for a boy who constantly had speech issues last year.
We have accessed alot of support from The Cerebral Palsy Alliance ( formerly The Spastic Centre).
If you ever want to ask questions please feel free to pm me.
Edited by Sapere Aude!, 21 June 2011 - 02:09 PM.
Posted 21 June 2011 - 02:55 PM
I can very much relate to your story Michelle!
My beautiful niece had a stoke in utero as well. At first it was noticed that her left eye wasn't opening fully and the dr's put it down to her traumatic (forceps) birth. However, she also wasn't using her left arm much either. About three days after her birth, my sister was called back to the hospital as an ultrasound (done on her head as precaution) had detected a bleed in her brain.
The dr's said that it would probably resolve itself and there really wasn't much else done until at around 3 months of age, she started having focal seizures. Basically, it looked like she was having a startle reflex action over and over. It was then it was discovered she'd had a stroke in utero (the MRI dated the damage done to pre-birth) and the affected part of her brain was now sending haywire signals to the unaffected part, causing epileptic seizures. My niece was then put on a regime of different medications to try and stop the seizures, none of which worked. By around 8 months, she was having over 300 seizures a day and it had progressed from focal seizures to infantile spasms (much worse and can damage the brain). It was then decided that the only course of action left was to disconnect her damaged right side of her brain. The operation was done in January of last year when she was just over 10 months old.
Since then, my niece has been seizure free and is has gone ahead in leaps and bounds developmentally. She can walk, talk (albeit delayed significantly), etc. Her brain is making new pathways and she is doing everything using only one side of her brain. It's a blessing this happened so young as older stroke victims don't recover anywhere nearly as well. She has cerebral palsy, which she had anyway from the stroke, and left hemiopia from the surgery but we have no way of determining how much that affects her as she's never known any different.
Thankyou for sharing your story because it's such a rare thing to occur.
Posted 21 June 2011 - 03:07 PM
Thank you for raising awareness Michelle. You sound like an amazing mother! Being committed to Rose and accessing all the support necessary for a maximum recovery as early as possible is a wonderful act of love and devotion to your daughter. May she eventually make a huge recovery. Wishing your family all the best. xx
Posted 21 June 2011 - 04:09 PM
Thank you Michelle for sharing your story. Wishing you and Rose all the very best xx
Posted 22 June 2011 - 02:41 AM
Thanks Michelle for your story. I can imagine it must have been absolutely heartbreaking.
You mentioned you and your DH are committed to doing everything you can to assist Rose, I thought it might be worth mentioning to you about Constraint Induced Movement Therapy.
I first read about strokes in utero in a book by Dr Norman Doidge on brain plasticity called "The brain that changes itself" and how stroke patients can sometimes fully recover with the right treatments. I believe the key word is the "right" treatment.
May I suggest you look into this. I don't know about the availability of this therapy in Australia but it may be worth researching. Treatment early in childhood is imperative given how "plastic" their little brains are.
And finally I just wanted to tell you not to give up hope. I really wish you and your family all the best and hope for Rose's full recovery. http://www.researchandhope.com/stroke/cons...ovement-therapyhttp://www.normandoidge.com/normandoidge/MAIN.html
Just as an aside, this book also makes interesting link between white noise and autism and treatments for autism.
Posted 22 June 2011 - 08:49 AM
Thanks for sharing your story and journey dealing with Rose' stroke. What a dear little girl you have. I am glad she is getting the help she needs now that you know what the problem is and because its being treating early I hope it can be corrected as much as possible. Keep enjoying your lovely little girl.
Posted 22 June 2011 - 09:30 PM
I too have a daughter with hemiplegia. Jessica is 5 now, and was diagnosed at about 6 months. She's doing pretty well, but we are always trying to make sure we are doing everything possible to help her.
I thought I would buy into this conversation in response to the reply regarding Constraint Induced Movement Therapy (CIMT). A couple of years age my husband read the same book mentioned, "The brain that changes itself", and we came to the same conclusion that it would be worth finding more out about this mode of therapy. In the book they talk about a method of CIMT developed by Professor Taub in Alabama, which basically involves intense blocks of therapy - up to 4 weeks with 6 hours per day. There are several programs in America that offer this type of therapy in this mode - usually run as a summer camp for kids. We found that in Australia there is nothing similar to this offered. There are certainly OTs using CIMT, but not at the same intensity.
We decided to give one of the American Summer camps a go, and Jess attended Camp Helping Hands in NJ, USA last July. She was four at the time, but coped really well with the intensity - 6 hours a day for 4 weeks. The camp was with 20 kids and a ratio of about 1:3 therapist to child, and was run in a really fun way. She coped with the contstraint (wearing a cast on her good arm) well bc all the other kids were. In fact she had a ball! I was impressed with how well she participated - back here in Aus we were struggling to get her to work well in therapy because she was getting so sick of it! So from that perspective it was a success - at her age, being with other kids like her was amazing for her. It's hard to judge whether she made real gains physically - she did score higher on a test done here in Melbourne both before and after the camp. But the gains were certainly not mind blowing - maybe just an increase in the spontanaity of using her affected hand.
I really don't know why this kind of therapy isn't run in Australia. I did spend a bit of time on my return trying to organise a group CIMT therapy session, but to no avail. I think the way the medical insurance works in USA makes it easier for the camps to run there - their insurance covered the cost, whereas here i don't think our's would. Also, they have very long Summer holidays, so four weeks is only half of their break so fits in better. And I guess Summer camps in general are more the norm over there. We have, however, made some contacts with other people with Hemiplegia, and Jess (and I) really love getting together with them and sharing experiences! There are so many treatment options out there that it's great to hear what other people are doing. And it's important for Jess to meet other kids in the same boat as her.
Also, I've been trying to follow the research on this type of therapy and it seems that the jury is still out on whether intensity is still the way to go anyway, and whether constraint therapy or two-handed therapy is the best. In fact I think at the original Taub clinic in Alabama they now run the program for only 2 weeks at a time.
Hope some of this is useful info!
Posted 23 June 2011 - 03:31 PM
Thanks so much for taking the time to read and respond to Roses's story and for sharing your stories too. There any many kids and parents that have been through this, however we have found that not a lot of research has been done in this area.
Parents seem to be the ones that diagnose that something is not quite right instead of doctors and there are limited specific services deading with childhood stroke in Australia.
America does seem to have a good netwrok through CHASA (childrens hemipelegia and stroke association) and I have heard about the yearly retreats they have and would love to attend one year, perhaps when Rose is a little older.
I have heard about that book 'The brain that changes itself' and have read a bit. The constrictive therapy sounds interesting and I think definately worth trying. Rose already gets frustrated when we try to restrict here strong arm though. She is now 15 months, perhaps when she is a bit older that might work? Although not sure as they often say the sooner you start, the more benefical it is?
At our last session with the physio and OT, they recommened that when Rose is 2 that she has botox in the hand, elbow and foot. They say that this helps to relax the tightening muscles and with intensive therapy after this can really help. Has anyone tried this?
I really appreciate the response, and hearing the stories of other parents and children going through a similar thing.
I find that I am often not very good at speaking about whats going on, but I found it quite theraputic to write it down.
Wishing all you mums and parents luck with your little ones.
Posted 25 June 2011 - 08:43 PM
Hi again Michelle,
Yes, Jess has been having botox in her arm and leg twice yearly since she was 2. Sometimes we get great results - the first time she had it her thumb came out, and has stayed out since. Sometimes the results haven't been as noticeable, but then it may have just reduced the tightening that was going to occur in the future! It depends on the intensity of the therapy you have access to afterwards as well.
Posted 28 June 2011 - 08:07 PM
A lady at the park once asked me if the reason why Rose had a stroke in utero, was because of something 'I' did while I was pregnant!
People can be so stupid! I'm so sorry you had to endure this person
There's a mum at my kids' school whose son (now 7 or 8) also experienced a stroke in utero. I think she does a lot of volunteer work with a support group. If you want any details I am happy to ask her
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We had six adults standing there, so I felt like I could relax a bit. After all, what could go wrong with so much supervision?
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