Monday, April 27, 2009

It's stroke awareness week!

Seeing how it is stroke awareness week I was asked to write a blog regarding our situation. I have already listed several blogs based on this information so I will keep this short. I hope my post will help educate someone reading it, and reach out to someone who needs it.

"There has been an event in your baby's brain that has caused some issues". These are the words that were spoken to us by a specialist, and will go down as the worst words I have ever heard. I remember saying, "What do you event?". The kind doctor then explained that there was old blood seen on both sides of Jude's brain which indicated a possible stroke. I come from a medically educated family so I was aware of what a stroke meant, I knew a baby could have a stroke while being born, but I never considered a stroke in utero. We were told this news when I was 19 weeks pregnant with Jude, and the months that followed were torture. The specialist had explained to us that she saw cortical thinning, and thought the outcome may be severe. We then took or information to some of the best child neurologists we could find. We were told that Jude's brain could compensate for the damage, or he could be profoundly "retarded". He could have dyslexia, or he may never function. It was a broad range of possible outcomes with nothing but a wait to see basis in front of us. We could not bring ourselves to terminate a pregnancy based on a "maybe". We watched Jude through sonograms as his tiny body grew, and his head grew, which was a great sign. Thus Jude was born in September 2008 with a loud wail, and a perfect apgar score. We were so thrilled to see our tiny bundle of joy in what seemed to be perfect health.

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At three months of age Jude was smiling, rolling, and eating well. I thought everything was going perfectly, until the dreaded day that Jude experienced a grand mal seizure. I immediately called the doctor panicked, and wondering what I needed to do. The neurologist was surprisingly calm, and set an appointment for us to come in a few days later. I tried to smooth my frayed nerves until the appointment, but I then noticed Jude was having several small rhythmic movements with his arms, and mouth each hour. When we got to sixty plus movements a day I rushed Jude to the ER. After hours of testing, and an MRI we were given the news we never wanted to hear. "The event in your baby's brain caused a neuronal migration disorder which in turn caused bilateral closed lipped Schizencephaly." Basically this means the stroke caused Jude's brain cells to go the wrong direction, and he will never be normal. We were told he might not walk, talk, and may even pass away in early childhood. We were devastated, but then we became determined! We knew that we loved Jude with all our hearts, and that with patience Jude may overcome some of what we were being told. Jude will be limited, and he does have cerebral Palsy, but only Jude can determine what Jude will do! No one can put an expiration tag on our baby, and no one can say what his future holds. With therapy, love, encouragement, and prayer he has already accomplished so much! Due to the wrong seizure medication Jude lost his smile, his roll, and his giggle. Luckily, we found the right medication and Jude has regained those abilities, and is learning more each day. We pray that he will continue to amaze us all. Our little inspiration is truly a blessing.

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Throughout this process we have learned so much about Pediatric Stroke awareness. When telling Jude's story I constantly hear, "I never knew a baby could have a stroke". Actually, 1 in 4000 babies will experience a stroke in utero, or at birth. If you think about it, that is a rather large percentage. There is rarely anything you can do if a baby suffers a stroke in utero. Most often it happens with no known cause. In fact our neurologist said "a baby has a very fragile brain, and it's fyrable, but most babies will recover from this, and you will never even know it happened". In Jude's case he just couldn't recover from the stroke. Being aware that a stroke can happen can encourage a parent to get early intervention, and therapy. As evident from our friend Kendall who's parents found out when she was 6 months that she had suffered a stroke in utero. They noticed issues, and delays, and got her the help she needed. They are amazing parents, and doing everything they can for their little girl. You can read her story here,

Ellen is another example of an amazing mom providing a great life for her son who had a stroke. You can read about her son Max here She has been an inspiration to me because she has such an amazing attitude. There are a vast amount of other moms with blogs about their children's strokes. I wish there were zero blogs about this issue, and by spreading awareness, and funding research maybe one day that's a possibility.

Also (in my opinion) I believe there is a large amount of evidence to support that the factor V Leiden issue can relate to strokes in utero. I suggest having your OB do a simple blood test to look for this issue. Some doctor's will disagree with me on that subject, but the vast amount of mothers in my networks that have this issue is evidence to me this is a widespread problem that should be addressed. Factor V is a clotting issue, and your OB can work with you if you test positive. In my opinion I think the test should be mandatory for any young woman interested in birth control or having children. If you have the factor V issue you can only take specific forms of birth control. My OB told me that 20% of the population has this issue. It's worth a simple blood test!

In addition strokes are fast becoming one of the top ten killers in children. So what can you do to help prevent a stroke in your child? Below are some great websites I have found that provide necessary information for stroke awareness. I encourage you to read them, and learn the signs and symptoms. I don't think anyone around me will have a child that suffers a stroke, but awareness is education. An educated mind is a prepared mind!

Note ~ I am NOT a doctor, and only provide this information for you based on research. Please consult your medical professional if you have any questions regarding your child.

This post is really about stroke awareness, but I would like to inform you that Jude is having small spasms again. We are hoping that a slight medication increase will stop this activity. He had several episodes through the night, and was rather grumpy from them.

Please support childhood stroke awareness....
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Mommy Melee said...

Thank you SO much for sharing your story.

Cjengo said...

and I appreciate your help with blog nosh so much!!!

Ellen said...

It is good that you told Jude's story, both to help raise awareness and because I do think it's cathartic to get it out. I know I felt that way when I finally told Max's story.

Thank you so much for the kind words, they mean a lot to me. You inspire me, too.


Moms On The Go said...

Thank you for telling Jude's story, he is a little miracle, I wish him and your family all the best and I hope he beats all odds.

I will be following his story from MBC.

Anonymous said...

I love your blog and reading about your sweet baby boy Jude. My son is 7 is a stroke survivor. We are still trying to control his seizures. His webpage is
I wish all the best for your family and Jude! I am glad you are getting the word out about Stroke Awareness.

Tatum said...

Thanks for your blog. Do you know of any websites that have exercises or apparatus to use with babies that have had stroke in-utero?

Thanks so much,


sharon said...

finally i dont feel so alone im a mum of 4 from the uk which dont have alot of information,awareness or groups my 4th child had a catastrofic stroke hours before she was born due to placenta abruption the stroke was so bad that it coused the whole back and some of both sides damage to the brain,she is severly visualy impaired,has cerebalsy to right side and epilepsy,anything else we will learn as she grows, we were told that she wouldnt walk talk basicaly do nothing but smile at us,
she is 21 months now and even tho shes behind for her age she can walk tippeetoes shes learnin to talk and can even sing the right tune to nusery rhymes she really is as the doctors call her a miracle girl and they all say she should NOT be doing what she is, it can happen shes proof of that wat u are doin for ur little angel will help him to become the best he can but like me no matter what the outcome may be or what the future holds they have our love
thankyou for sharing your story and for helping me realise (even tho i know im not but do feel it sometimes) that im not alone xx

danielle said...

My son also had an in utero stroke- he has cerebral palsy, is blind, has hydro and also a seizure disorder. Thank you for staying positive- as sometimes I know it can be hard. The world needs many, many more positive stories like yours...and mine. God Bless.

Julie Hubbard said...

Hello I am 38 years old and learned recently told I had a stroke in the womb I always had seizures and difficulty in school my left side of the brain. Has taken over cause of the damage on the right I recovered and had a normal life. Had a child who was normal and did what anyone in life would do but am very interested about why it happens thank you for ur time.