None of the stories or pictures on these pages may be used without the express written permission of the Pediatric Stroke Network and/or the parents of these children. These stories are copyrighted by the intellectual property laws. All stories are original submissions written by parents.

 

Jake's Story

 

    Jacob was my first baby.  This pregnancy by no means was what you would call a "textbook" pregnancy.  I gained 4 pounds the first 6 months because I threw up 24 hours a day the whole time I was pregnant.  I also had gestational diabetes. One day, at about 32 weeks Jake stopped moving.  I had an ultrasound one month before and he was perfect.  He moved constantly for weeks prior so it was odd when all of a sudden nothing.  Even singing him his favorite song "You are my sunshine," which in the weeks before had him dancing, did nothing.  We went to the doctor the next day and she asked me if I wanted to go for a  non stress test now or wait until next week.  We went that day and in 3 hrs. no movement.  Being in a small town we had to immediately drive 65 miles to the nearest hospital that could do an ultrasound that day.  30 minutes later I was on a bed being led into the operating room because my son suffered a massive stroke on the right side of his brain.  The doctors told my husband he had a 20% chance of having a live baby before they left him alone in the hallway in tears.  
       

    3 minutes later on December 23, 1999, 8 weeks early by emergency c-section Jacob Anthony was born and surprisingly enough needed no oxygen.  He was 4 pounds 13 ounces and 18 1/4 inches long.  His first apgar was a 4 but by 5 minutes his apgar went up to 9.  As soon as he was out I was woken up in a hurry to see my son because they were airlifting him to another hospital 65 more miles away.  They made me stay for 2 1/2 days in the one hospital before I convinced the doctor to let me out so we could go to our son.  Once we got there it was one horror story after another.  Jake couldn't suck, swallow and breathe so he was gavage fed for the first few weeks (I pumped breast milk).  The horror stories were what the doctors were telling us......he would be most likely severely retarded, have CP, be in a wheelchair...etc etc.  The thing was, he was not on one machine for anything.  Meanwhile it was one blood test after another with nothing coming us positive.  They wanted to send him home with a tube in his stomach to feed him because one Neonatolotist said he would never learn to eat by himself but boy did I prove him wrong!  Since we were 130 miles from home we had to stay in a hotel to be near our son and with the hotel being 2 miles away we spent 20 hours a day in the hospital with Jake.  The last few days I stayed in a chair overnight to teach Jake to eat.  While in the hospital an Occupational Therapist who saw Jake everyday discouraged me from starting therapy right away because I should just spend time with him.  They all honestly thought he would never be able to do anything for himself so I shouldn't bother.  Finally after 3 weeks of being in the hospital, still 5 weeks short of his due date, they let Jake go home because he was doing so well.
       

    The work started once we got home.  He had Physical, and Occupational Therapy once a week each and a Child Development Specialist came once a week or so.  I also did what the therapists told me every minute Jake was awake.  When he was about 4 months old a repeat MRI was done and the whole right side of Jakes brain was like a big hole.  The amazing thing was he was doing so well with all the therapy.  When any Doctor saw him they couldn't believe he was the same baby his chart said he was.  One of the top Neurologists in the country ,at Children's Hospital of Pennsylvania, told me if he didn't see Jakes chart before he came in he never would have known. 
        

    He is just turning 2 now and he is soooo amazing.  Of course he did most everything late....he was 6 or 7 months when he rolled over and sat up (Jake always did the hard stuff first) and at 2 he still isn't talking, but he does MEOW!! He did walk at about 14 months and needed no help or support to learn.  He never was diagnosed with CP, never had a seizure and was only on medication for reflux his first year.  He walks, he runs, he jumps (or at least he tries) and he especially loves to chase our cats.  The only problems we seem to be having are some sensory and emotional problems.  Since Jake can't talk he is prone to throwing fits because he gets frustrated very easily.  He is extremely intelligent and understands everything (when I say everything, I mean EVERYTHING) but just doesn't seem to be able to get the words out.  Speech therapy is just starting now so hopefully that will help.  They are also going to start him on a sensory integration program to help him learn how to process what is going on around him.  He loves to be cuddled, and have his arm and back tickled but only on his terms.  His left eye turns in a little and they say he doesn't hear low tones very well , but still, as everyone says "It could be worse." 
       

    All that ever turned up in his blood work to explain a massive stroke was that his anti cardiolipin antibodies were high (blood clotting factor) but are now at an almost normal level.  He was being treated with half a baby aspirin a day until a few months ago.  It was also found out that I tested positive for Factor V Leiden and could have caused a blood clot to form on his side of the placenta.  Still, we will never know how or why except that we feel so blessed at having our Christmas Miracle and would never trade this beautiful baby in for anything.  One thing we do have to look out for are learning disabilities but if that is the least of my worries I will take it.  Every time Jake goes to a doctor and gets a clean bill of health I thank God for watching out for him. 

All he has to do is smile and everything bad just seems to go away.
Angela, Anthony, and Jacob Bentzel

 


                      

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This page last updated 12/31/2001