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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 Neonatolotist who helped deliver him (with apgar 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".   Later on it was determined by his MRI scar tissue that his stroke occurred something around the 7th month gestation.  We never were able to determine what caused his stroke.  He is currently involved in 2 NINDS studies to help try to determine why children are having strokes.  There must be a cause!

The outcome was not predictable.  His future was unsure.  He was put on Phenobarbital for his seizures and after one week was sent home.  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.  He is behind in language though.  He can talk and express himself pretty well but it is multi-step directions and self expression he has a hard time with. 

7/04 UPDATE.  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 area was the left front temporal lobe.  We now know it is was not only that area but his Broca's area in the cerebral cortex and the Corpus Colosum along with the left front temporal lobe.  Three areas of brain damage from one hemorrhage.  Jacob was diagnosed as Broca's Aphasic.  Broca's Aphasia is a language disability.  He is currently in speech therapy 3 times per week in the school system but now that we know what he is facing he will need more help.  We need to get approved for Katie Beckett, Wisconsin's Medicaid for kids program, so that he can get all of the services he needs.  We just can't afford the out of pocket expenses more therapy would cause.  He does receive Occupational Therapy through the school system three times a week and Horseback Riding Therapy free of charge from Rides & Reins.  Bless them.   Jacob is also showing some attention deficit issues but at this time it is hard to tell if they are stroke related or ADD.  With all of his academic testing he came out at a 104 which is a solid average test score in comparison to other kids his age.  Once you factor in his language scores, which all schools are required to do, he comes out at a 77 which is in the borderline diminished mental capacity area.  Some schools would say in the mental retardation area, but our school system and neurologists prefer not to use that term.  Lastly we also found out that Jacob isn't a lazy child.  He has a very hard time motivating and getting things started or done.  We always attributed it to him just not being motivated or just plain lazy.  This is not the case.  When the Corpus Colosum 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.  We also found out that Jacob has severe impulse issues.  He can't be trusted doing simple tasks such as riding his bike around the neighborhood.  He will go past our limited area and he will drive in other people's yards and even into open garages.  He has no concept of danger and when asked if he would go with a stranger he doesn't know if he was promised a piece of candy, he said yes.  We just can not take our eyes off of him, and at this age he should be allowed a few play minutes without adult supervision.  :( 

Jacob has a wide variety of diagnoses now.  He has Hemiparesis, Hypotonia, Epilepsy, Aphasia and diminished mental capacity along with attention issues and sensory issues along with asthma and allergies.  He has a long, hard road ahead of him but I have no doubt we can help him have a wonderful and fulfilling life! 

Since his birth, he has been my inspiration, and he leaves me in awe everyday.  He is now 6 and a half years old and is just a little cutie but also quite the little stinker. 

Jacob started 1st grade in September 2004.  He worked very hard and did wonderful in Kindergarten and there is no need to hold him back academically.  A big part of me wonders if emotionally he is ready for main stream school.  His biggest problems are that he is easily distractible, he has a very hard time with W questions (who, what, where, when, why) and he has difficulties following multi-step directions.  If he is lost he will not ask for him but will daydream and stare out into space.  He is also a dawdler and getting him on task is very hard.  But he has made so much progress these past few months and I can only attribute it to the fact that he was off all of his seizure meds for the past year.  He is a great kid who is showing the world that you can overcome ANYTHING! 

I am proud of my little boy!   On a frustrating note, his Epilepsy has been hard to control.  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 normal!  :)  If he does start to seize, we will be starting Lamictal.  The hardest time will be puberty.  **UPDATE** On 8/26/04 he had his first seizure in a year and a half and it was a huge one.  His normal seizures would be absence but this one was a major complex partial that lasted approx 5 minutes total.  After a trip to the ER we had a CT scan done which only showed the original damage.  We had an EEG done on 9/1 and we won't know the results for a few days.  We are so sad that the seizures have returned.  We are petrified that he will have to go back on meds which can cause so many terrible setbacks.  He can lose all of the academics he has learned and so much more.  Currently we have a script for rectal Valium.  We keep one in the car, school and home.  I pray we don't have to use it.

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!!!   

One other frustrating thing is that Jacob has some serious dental issues.  Due to his gingival hyperplasia he absolutely hates having his teeth brushed because the gums are still sensitive from the med.  We lucked out and got a GREAT Dentist in Dr. Donald Whitlock who is a pediatric dentist in town.  He is amazing and Jacob no longer freaks out when we go to the dentist.  Jacob goes for cleanings every 3 months instead of the normal every 6 months.  This way we can keep an eye on his gums and we can make sure that the teeth are cleaned really good since he fights so much during brushings.  Also, when Jacob had his 6 year old x-rays done we learned that Jacob also has another rare thing going on, his two bottom middle teeth don't have the adult teeth behind them.  What this means is that while Jacob has his baby teeth in place, there are no adult teeth behind them to replace them once they fall out.  According to Dr. Don this is a rather rare occurrence and it is even more rare for it to be the bottom teeth when the instances of this are often seen to be the top teeth.  What does this mean?  MORE BILLS!  Currently we pay for 2 of his cleanings out of pocket due to our insurance not covering them.  Jacob will need extensive work done to try and compensate for his missing two bottom adult teeth.  There are two things they can do about it.  They can either implant fakes ones or they can use braces to move all of his bottom teeth to the center to fill in the gap.  While there is still a slight chance he can grow his adult teeth, it is unlikely.  Dr. Don would like for Jacob to keep this two baby teeth in for as long as possible until we can decide which way to go.

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?  I am not sure, but it is sad. As President of PSN I hope to be able to prove people with the latest in Childhood Stroke information.  I am so grateful PSN was here for me after our diagnosis and I am so proud to be such a big part of it now!  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!

Jacobs story would not be complete at this point if I didnt 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.  As of 6/01/04 the only issues we have are from her Asthma/Allergies.  She takes Singulair and Zyrtec and gets nebulizer treatments with Pulmicort and liquid Albuteral.  At her last early childhood evaluation she passed with flying colors and does not need any more early intervention!  It is hard for me to believe she will be starting K-4 this 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.  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 7/04 she is 54 pounds and is 4 feet tall.  The same height as Jacob and 5 pounds heavier.  She is a little chubby but is not classified as over weight.  She has been a solid 120% in height and weight since birth.  My great-grandfather was 6'4" so I think Hannah will be tall like him.  Also in comparison Jacob is 4 feet tall but he only weighs 49 pounds which is 30% on the charts.  He is so skinny which is a trait to stroke kids.  I am constantly asked if they are twins.

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.  

The Tangen's

(Jacob during horseback riding therapy at the age of 5)

 

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