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 law. All stories are original submissions written by parents.


Jonathan's Story

 

    I found out I was pregnant December 21, 2001 and it was quite a shock.  I was so scared to tell my boyfriend because we had not been together that long, but I knew that we could handle it so he found out the next morning at about 5:30.  I got him a little card and sat the pregnancy tests in front of him the night before, even bought him some candy to go with it, but he never saw the tests.  He is in his own little world sometimes!

    I had been feeling ill, and had a pretty nauseas first 4 1/2 months.  I was involved in a car accident at 8 weeks, and ultrasound was performed and everything looked perfect.  I went to all my midwife visits, tried to eat and took my vitamins.  My second trimester was a breeze.  I felt wonderful, and the growing anticipation of meeting my baby was almost too much to handle.  All my life I wanted to be a mommy, never really had any other dreams besides that, just wanted to be a mommy.  At about 26 weeks I started having some cramping, went in and had an NST and they said everything was wonderful, baby looked great, no contractions, just that my uterus was stretching and causing pain.  After that point I became very fearful.  Something never seemed right after that, I was in and out of the midwifes office getting checked because things just didn't seem right to me.  I played it off as being a paranoid mother.  My baby was growing well, and the heartbeat was fine so I always went home.

    July 7th I was admitted to the hospital for pre-term labor and put on Magnesium Sulfate.  That stopped the labor, and I was released 2 days later, still having contractions, but my cervix was not changing.  I was also diagnosed with PIH (pregnancy induced hypertension) and started having NST's about 3 times a week, and placed on bed rest.  I continued to think something was wrong, but was always reassured that he was a "good baby" reacting as he should with the NST.

    My due date was August 29, 2002, but we went past that, and was finally induced September 4th because of my uncontrolled blood pressure, and it was time for this kid to come out into the world.  The pitocin was started at 9:30 am and I finally went into hard labor at 6:30 that evening.  After getting some rest after my epidural was placed at 1 am on the 5th I started pushing at 5 am.  My beautiful baby was born at 7:26 am weighing 7 lbs 7 oz.  Lucky number 7.  He was taken to he special care nursery because he was having difficulty "pinking up" but about 10 minutes later he was in my arms again.  His apgars were 8 and 8 and he had nuchal cord x1.

    Jonathan started seizing at about 8 hours after he was born.  It started in his fingers, and about 11:30 that night it involved his entire left side.  He received a CT scan and was loaded with Phenobarbital.  The CT scan came back unremarkable, showing nothing.  He had a spinal tap and some additional blood work and they continued to load him because the seizures would not stop.  My poor child was not even one day old and was being put through hell and no one could tell us what was happening.  After a battery of test and everything coming back negative, the neonatologists decided that Jonathan was suffering from HIE which basically means he had a lack of oxygen at some point during the delivery, and that since they got the seizures to stop by maxing him out on Phenobarbital and some Dilantin, he probably won't need to continue the meds and he will be fine.  They wanted to do an MRI to see where the brain was affected, so one week later he had his MRI.  I was alone holding him in the nursery, his father had gone home for some things, and the neonatologist came over saying he needed to speak to me.  He looked very sad, and he said "I am sorry, but your son has had a stroke".  I don't think that it really hit me until I saw the big white blob of nothing on the MRI.  I couldn't control myself.  WHY WHY WHY my baby.  Looking at him he was so perfect, all ten fingers and all ten toes.  He was breast feeding beautifully and I finally got that gaze that newborns give their mothers.  We also found out that day that we could have known the results a week before hand, but the CT scan was misread.  So what does this mean, my child has had a right pariatal lobe stroke.  What is going to happen to him now.  Tony and I were told that he would have major difficulties, and that he probably would not go to college.  How could my son, my beautiful baby be so sick?

    We took Jonathan home a day later.  It was so wonderful to be home, but so frightening at the same time because we didn't have all the monitors for his vital signs anymore.  I would check him every two minutes to make sure that he was breathing, every little move he would make I thought was a seizure.  We went to endless doctors visits, people always poking at him.  He would scream anytime I would put him down.

    Jonathan is only 11 weeks old, but he has reached every milestone that a 'normal' baby would.  Early Intervention says that he has a weakened left side, which Tony and I noticed only in his hand.  He smiles all the time, and is starting to laugh.  We take him in the tub with us and he is an expert at splashing, with all four limbs!  He loves to stand up and bears weight on his legs, and he squeals in delight when I kiss his little feet.  The only problem we really seem to have with him is that he only really likes his mommy, but I really don't consider that a problem.

    Jonathan has a repeat EEG on Tuesday November 26, and we are hoping there is no abnormal activity so we can wean him off the meds.  I thank God everyday for my 'special' child, and no matter what he has to go through, or the difficulties we may face, I wouldn't trade him in for a 'normal' child if someone paid me.  My baby is better than normal, because he is perfect.


June 6th, 2003

    Jonathan continues to amaze us all.  His EEG showed no seizures and he was weaned completely off
phenobarbital on December 23.  He was having some issues with left sided neglect, and we got him into aquatic therapy.  What improvement that has shown.  At nine months he is now crawling, getting into everything, pulling himself up onto whatever he can grab, and is walking around furniture and behind things that move across the floor.  He talks constantly, and we have recently began signing with him.  It amazes me how they told us our son wouldn't do this or that, but he really does everything and more.  He did have a CT scan in January, which showed the stroke area shrunk dramatically.  There still is no reason why Jonathan had a stroke, but that is okay.  He is such a little miracle, and is so perfect.
 


 

Thanks for listening!
Sarah, Mommy to Jonathan, 11 weeks, stroke in utero

 

 

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This page created on 1/17/2003
This page last updated 6/24/2003