Jacob's Story

My Son Had a Prenatal Stroke!!!

The day I found out I was pregnant was one of the happiest, yet scariest days of my life.  I wasn't ready, I had just gotten engaged, I had always wanted to shed those last 25 (or so!) pounds before getting pregnant and I was very angry that the birth controls pills didn't work!  But once time went on, and I felt my little boxer move inside me, I was hooked. It was a VERY complicated pregnancy.  I was put on partial bed rest from 4 months and complete bed rest at 6 months.  I had Gestational Diabetes and Toxemia.

Once labor set in, it took the form of severe stomach cramps, but not contraction type pain.  I thought I was having a severe case of indigestion :) I sent my husband for some Tums but the pain would not go away.  I called my OB who said to come on in and let's have a look.  Once there, it was confirmed, I had started very early labor but since my due date was the next day they decided to hook me up to Pitocin and they said I would have a baby in a few hours.  They lied!!  34 hours later, once I finally reached the 10 cm mark, fully effaced, they said to start pushing.  I pushed with all of my might, for about 30 minutes.  When the Dr. finally came back in and checked me and he told me to immediately stop pushing.  I had swelled around my babies head and he was stuck in and in distress, it was c-section time.

The pace got frantic, and after I was completely knocked out, my son was born at 6:57 AM on Wednesday March 4, 1998.  I woke up an hour later and they placed his 9 pound 7 ounce 22 inch body in my arms and I bawled.  I asked if he had all of his toes and all of his fingers and I thanked God he was healthy and here (and that I had a morphine drip!).  I did notice, before peaceful morphine splendor hit me, the awful purple/black bruise that took up the entire top of his head from being squished by me during labor.  He had a horrible cone also.

The day after he was born, my husband was watching intently as I tried to breast feed my son, Jacob Helge.  He asked me why his left middle fingers were rhythmically twitching.  I didn't know and we asked the nurse when she came in.  By that time it had stopped.  The next time she came in the room, she saw it, and called for one of the doctors to come in.  That doctor called for the Neonatologist who helped deliver him (with apgars scores of 8 and 9) to come to the hospital.  After examining him, they informed us that he was having seizures and would have to be transferred ASAP by to a different hospital with a specialty NICU.  

We were floored.  They hooked him up to all of these machines and tubes and they medicated him so that he couldn't even open is big blue eyes to look at us.  They told us to go be by him until the ambulance came.  They took pictures of him for us "just in case".  The ambulance was there so fast, and after a flurry of activity my son was taken away from me. I had to stay at this hospital because of my c-section.  My husband followed the ambulance.  After a spinal tap, EEG, CAT Scan, MRI and numerous blood tests we were informed he had a stroke "sometime in utero".   We were never able to determine what caused his stroke. 

The outcome was not predictable.  His future was unsure.  He was put on Phenobarbital for his seizures and we were sent home after being told to "love him, he will only be a vegetable". 

Once we walked in the front door we were so lost and didn't know what to do for our son.  We decided that we weren't going to just sit there and do nothing to try to help him.  Since the first day he came home we did in home therapy and infant message with him 3 to 4 times a day.  He started to walk, no assistance needed, at 8 months.  He started walking backwards at 10 months. 

In July 2004 we had Neuropsychology testing done as a follow up to his 2002 tests.  We were originally told that Jacob's only damaged areas were the left temporal and parietal lobes.  We now know it is was not only those areas but his cerebral cortex and the Corpus Callosum as well.  Jacob was also diagnosed as having Transcortical Aphasia, which is a language disability.  He is currently in speech therapy 3 times per week in the school system to help him out with his speech. 

We also found out that Jacob isn't a lazy child, like we used to think.  He has a very hard time motivating and getting things started or done.  When the Corpus Callosum was damaged it hampered the brain from getting the correct signals.  Even though Jacob understands what we are asking or telling him to do his body is just not telling his limbs to do it.  So while I was getting frustrated with him not listening to me he really was trying but just couldn't do it.  :(   Patience and encouragement are really the only things we can do to help him with this.  Lastly we were informed that Jacob presents as an elderly stroke patient would present with his language disability.  He also is a great example of the brain re-wiring itself.  While Jacob had a left sided stroke, the left side is his weaker side.  He is my anomaly! 

Jacob has a wide variety of diagnoses now.  He has Hemiparesis, Hypotonia, Epilepsy and Transcortical Aphasia along with eye teaming and visual focus issues.  I have no doubt my light fighter can overcome any challenge that is thrown his way.

Since his birth, he has been my inspiration, and he leaves me in awe everyday.  He is now 8 ears old and is just a little cutie but also quite the little stinker. 

Jacob started 3nd grade in September 2006.  He works very hard in school and is doing the best he can.  Thanks to a combined effort from everyone involved in his schooling he has made great progress and is in a mainstreamed class!  He does receive the services of the special ed department, which have greatly helped him be a part of his regular classroom.   

On a frustrating note, his Epilepsy has been hard to control in the past.  He has had Absence and Complex Partial seizures in the past. Once we find a drug that works the side effects force us to take him off.  He was first on Phenobarbital but it was causing too much cognitive delays.  Then we tried Tegratol which only created a monster child who couldn't sleep.  Then it was Dilantin which was working but due to severe gingival hyperplasia (swollen gums) he had to come off of it at the insistence of his Dentist.  He was then taking Topamax but due to serious issues with Oligohidrosis (decreased sweating) we had to take him off of this med fast.  His Epileptologist felt we should have him completely off meds to see how he is doing cognitively and seizure wise before introducing any new seizure meds.  His last EEG was slightly abnormal but she felt that the side effects of the meds outweigh the benefits of trying to control his seizure threshold.  While he has abnormal spiking, he is not actively full blown seizing as of right now.  If he does start to seize, we will be starting Lamictal.  The hardest time will be puberty. 

Thanks to the grace of a higher power we were able to see Epileptologist/Neurologist Dr. Mary Zupanc, who is very highly regarded in her field.   At one point she felt that Jacob was an excellent candidate for Epilepsy Surgery and we were in the process of pre-surgery testing.  We were just waiting for a Video EEG.  This would have told them exactly where the seizure activity was coming from and exactly what part of the brain needed to be removed.  At this point and time we are putting this avenue on hold.  We found out that our insurance will only cover 25% of his surgery costs because they consider this to be an experimental surgery.  Surgery can be from $35,000.00 to $150,000.00.  Side effects for the type of surgery can be loss of peripheral vision, partial paralysis, personality changes and loss of speech to name only a few.  I am more than happy to NOT have surgery as an option for him at this time!!!   

Jacob is part of a very special campaign.  He has a square on the National Pediatric Stroke Quilt to promote Pediatric Stroke Awareness sponsored through SAFE.  We had the honor of having the quilt in our home on 7/15/01 and here is a picture of that occasion.  

I fully believe Jacob's future would have been so much different if my husband had not noticed that tiny little twitching the day after he was born.  Our lives could have been so much different had we not had the early intervention.  I am thankful everyday that my husband saw those little twitches and thought enough to ask about it.  It is odd because I am the one with medical training and in my eyes my son was perfect and I never noticed a thing wrong.  To this day Jacob is still perfect in my eyes.  He is my miracle.

I have searched and studied and there just isn't enough information about stroke in kids.  Why is that?  As President of PSN I hope to be able to provide people with the latest in Childhood Stroke information.  There are so many children who have had a stroke and the parents don't even know it because you don't associate children or babies with a stroke.  I feel this needs to change.  I even have people TELL me that children and babies don't have strokes when they hear Jacob had one.  I wish I could carry a wallet size photo of his MRI films to prove it to them!

Jacob’s story would not be complete at this point if I didn’t introduce his little sister Hannah June.  Hannah was born 11/99 and she has had her fair share of problems.  She was born 4 weeks premature weighing in at 10 pounds 4 ounces and was 21 inches long.  And yes, she is documented 4 weeks early.  No date mistakes.  I had a very rough c-section delivery and almost didn't make it through.  After being told by numerous doctors that the next childbirth could kill me, Hannah is our last child.  Hannah is diagnosed as having Macrocephaly, Dysphagia, Allergies and Asthma.  It is hard for me to believe she started 1st grade in September!  It was a lot of hard work but she really caught up.  She is also a little cutie and has the most beautiful smile! 

 We have noticed that due to her Dysphagia, Hannah doesn't like to eat many different textures.  She does not eat any vegetables and will only eat bananas from the fruit group.  She was eating lettuce but she had a gagging/throwing up Dysphagia episode once with it and now she won't eat "salad".  Her lack of great nutrition doesn't seem to be hampering her though.  As of 3/06 she is 77 pounds.  The same height as Jacob and 5 pounds heavier.  She has been a solid 120% in height and weight since birth.  My great-grandfather was 6'4" so our doc thinks Hannah will be tall like him.  In comparison Jacob only weighs 72 pounds which is 40% on the charts.  He is skinny which is a trait to stroke kids.  I get asked on a regular basis if they are twins.  It sure did feel like it during those toddler years!

Thank you so much for letting me share our story.  I am so very nervous about my son's future.  I worry if he will ever be able to drive a car or if his Epilepsy will prevent him from doing so.  I worry that he won't do well in school due to lack of concentration or difficulties in learning.  I am petrified he will be teased because he is different.  I worry if Hannah and Jacob will kill each other before the age of 18.  I try so hard to make their lives as normal as possible.  Hopefully we are doing enough.  

Jeff, Heather, Jacob and Hannah

(Jacob during horseback riding therapy at the age of 5.  Notice his perfect English?)

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