Tuesday, May 1, 2012

Did you know???


Today is May 1st and it's been awhile since I've posted.  I have good intentions of keeping more consistent with my entries, but life always seems to get in the way.  I couldn't let today go by without letting you all know about something very important and dear to our family.  Today is the first day of Pediatric Stroke Awareness month.  Did you know that kids, newborns and even unborn babies can and do have strokes?  I didn't either until that fateful day back in 2002....June 29th to be exact!  But let me start at the beginning of this story (sorry it's going to be lengthy....grab yourself a cup of coffee, tea or hot chocolate and get comfortable).  I was pregnant with my second set of twins and only weeks before had revealed to my husband, on Father's Day, that he was going to have two sons!  We were, of course, very excited about this as we already had 3 girls and I so wanted a boy to give my father's name to.  My father went heaven bound at the age of 41 in 1988.  At a "routine" ultrasound (as routine as it could be having a high risk pregnancy), as I lay there asking questions about what they were looking at and measuring, the perinatologist explained what they look for in the ultrasounds and then abrubtly excused himself.  He told me he forgot to do something and he'd be right back.  Seconds before he did this, he measured one of the ventricles in the brain and the measurements were just over the threshhold he said would cause some concern.  I didn't think much of it at the time, knowing that the measurements had a range of error.  He came back into the room and apologized and started to explain....and my brain shut down.  There was something seriously wrong with one of my baby boys.  I was calm, I listened as he threw out medical terms that I didn't quite understand and then he said...."you'll need to consult with a pediatric neurosurgeon to determine the next course of action".  What pregant woman wants to hear that?!?!?!  He agreed to talk with my husband on the phone later in the day since I told him I'd never remember all the words he said and what it all meant.  He left the room, I got up to change and the ultrasound technician asked me if I was ok.  I responded truthfully...."yes, I'm ok....there is nothing that I can do to change the situation.  I just have to move forward and figure out what is best for my unborn baby and his brother."  I knew in my heart, mind and soul that only God could change anything about this situation and that's where I laid my trust.    Now, I will admit that as I left the office and got out to the elevator...I lost it....the tears just came and I sobbed...I had NO idea what the future was going to hold...whether my baby was going to survive and it made me sad, frightened even. 

The next day I spoke with an insurance case manager who reiterated to me the signs of pre-term labor and I assured her that I was not showing any signs.  I promised if I did, I would seek medical attention.  Later that day, something didn't feel right and after wrestling with myself about whether it was anything to worry about or not, I decided to stop at my ob's office.  The doctor on schedule examined me and found that I had started dilating.  I was only in week 25 of my pregnancy.  She ordered a test that would determine the likelihood of delivery within two weeks and ordered me to go directly to the hospital for observation and medication to stop labor.  I spent that night in a local hospital...they monitored my babies and gave me shots to help develop their lungs should they want to come into this world faster than they should, but they never gave me the medication to stop the labor.  On June 29th, the doctor came in and did another exam...I dilated even more overnight and found out the test run the day before came back positive.  If labor was not stopped my babies were going to be born within two weeks.   I was immediately transported by ambulance to Brigham and Women's Hospital in Boston.  This would insure that should the babies come, I'd be close to Children's Hospital for any needed intervention.

I'd never been in a circumstance to be at a teaching hospital before, so when literally 10 people walked into the room in white lab coats, I was a little nervous!!  Maybe it was more serious than I thought...why else would so many doctors have to be in the room to explain things to me?  They explained that I would be going for another ultrasound to see where things stood.  I was used to ultrasounds, no big deal.  So I thought!    The technician and the perinatologist there did much of the same as in all my other ultrasounds only this time I heard the words "Is that blood right there?" They were looking at my son's brain.  The answer I got when I asked, "I'm sorry, what did you say?" was "They will explain everything when you get back to your room.".... THAT didn't comfort me any!!!

The week I spent in the hospital was a whirlwind of blood work, ultrasounds, Non-Stress Tests, and MRI's.  Oh, and I couldn't get out of bed.  I remember one doctor ordering a test to check for cocaine in my system...that one made me laugh....ME????   I didn't know it at the time, but apparently that can be one cause for what happened to my son.  On July 3rd, we finally met with a neurologist in the Neonatal Neurology Program, Dr. Adre duPlessis.  He was very kind but he didn't sugar coat anything.  "Your son had a hemorrhagic stroke, Grade IV Intraventricular Hemorrhage.  We've never seen anything like this in utero...this is something we typically see in pre-term babies.  Based on the scans and the scar tissue, we estimate that he suffered a stroke about 7 - 10 days ago...around 24 weeks gestation."  We reviewed the ultrasounds and the MRI films and in that moment our world was turned upside down and backwards!!!!  "At best you can expect your son to have moderate cerebral palsy and at worst, severe cerebral palsy.  Expect the worst!"  The tears started flowing again...wondering....did I do something to cause this?  Of course, I knew the answer was that it wasn't me.  No matter what, God was going to be the only thing that would get us through.  "Your son will most likely be in a wheelchair for life, he will not be able to communicate with you without an electronic device, he will be on a feeding tube, unable to feed himself, he will not be able to take care of any of his daily living skills like bathing, brushing his teeth, getting dressed...."  I was discharged later that day with strict instructions of complete bedrest.  They were going to try to avoid labor until I was safely at 35 weeks.  The nine weeks that followed included weekly trips into Boston for ultrasounds, measurements and non-stress tests.  And all along the way, my God was with me and continues to be with our family. 

Our sons, Joshua David (David was my father) and Elijah Peter, were born just shy of 35 weeks via scheduled c-section.  Both my boys spent time in the NICU, Joshua a couple of weeks and Elijah about a month, before they could come home.  Our journey into the world of in utero stroke and hydrocephalus (this second thing is what the first perinatologist saw in the ultrasound) had begun.  Hundreds of specialist appointments, MRI's, CT Scans, Shunt surgeries, multiple therapies from occupational, physical, speech and aqua therapy filled our days, months, years.   Nine and a half years later, my son Elijah walks, talks, feeds himself, dresses himself, rides a bike without training wheels, and plays basketball in an organized league.  After 4 years in the public school system, God led us to home educate our children.  Although he has struggles, he never gives up and most of the time he doesn't complain about his differening abilities.  He is an inspiration to me and a true blessing and evidence of God's miracles!!!!

God provided the best support for our family in CHASA (Children's Hemiplegia and Stroke Association ~ www.chasa.org ). When we had questions about therapies, behaviors, education, needed recommendations for doctors, the families involved with CHASA were always there to help....even when we just needed to vent. We've formed many wonderful friendships through this group...a group that understands the struggles and rejoices in what most would see as menial accomplishments.   Can you help me spread awareness about Pediatric Stroke? Please watch and share this video montage and the press release CHASA Celebrates Childhood Stroke Awareness 2012 with your networks.  Elijah appears twice in the video montage...see if you can find our boy!  And remember, Kids Have Strokes, Infants Have Strokes, Even Unborn Babies Have Strokes....spread the word and save a life today!  You can also help by making a donation to benefit CHASA by visiting Elijah's Firstgiving Page.

3 comments:

  1. Dawn Marie, even knowing your family and most of Elijah's story reading this still made me cry. I can't begin to imagine how scary it must have been to learn of his stroke while still pregnant. While I wish neither of our kids had strokes. I'm so happy that it has given me the chance to meet you and your wonderful family.

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  2. Yes, Annette, it was scary, but I do feel blessed that God allowed me to learn about it before Elijah was born. That 9 weeks of bed rest gave me the time needed to research and come to terms with the diagnosis. It also allowed us to have Early Intervention set up within two weeks of him coming home from the hospital. As we both know, early intervention therapies are key. God has orchestrated everything right from the beginning and at just the right time :-)

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  3. Please consider sharing your son's story at iamviable.org. You might save a life and you'll definitely give someone hope! Thank you for sharing here.

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