Jonathan McGinnis

Jonathan’s Story

“He is breaking all the records in the medical journals for full trisomy 13’s!!”

Jonathan David McGinnis,  Trisomy 13, 4/25/2001, Boca Raton, FL

Jonathan-McGinnisJonathan David was born on a Wednesday afternoon in April, 2001 as a planned home birth.  During my pregnancy we had five ultrasounds in which no one picked up on any abnormalities (extra fingers, missing four ribs, heart on the wrong side of the body).  I did not have any genetic testing because I would not have terminated the pregnancy if they had found something.  He was rushed to the hospital and I followed a few hours later.

By the time I got there the NICU doctors had determined that he most likely had trisomy 13 or 18.  A week later the tests confirmed that he had full trisomy 13.  He spent 25 days in the NICU; they told us he would only live two or three days, a month if we were lucky.  They suggested that we take him to the hospice house at discharge, but we chose to take him home.

Jonathan McGinnis2Jonathan has two older brothers and three older sisters; we wanted a chance to be a family at home!  He went home on oxygen and was fed through a bottle.  Apnea spells kept me busy the first few months and he began having seizures at five months of age.  At ten months, we took him off continuous oxygen and only gave oxygen when he drank a bottle.  By one year of age he was off oxygen altogether.

That first year was full of fear for my husband and me; statistically the odds were against him making it to that milestone, but we believed that he was going to make it!  At three years of age he had his g-tube placed and had the nissan fundo surgery for reflux.

When he was six, we could no longer feed him by mouth due to continual aspiration, all feeds then went through the g-tube.  At seven years of age he had a vesicostomy (an ostomy in the bladder where the urine continually flows out) due to continual UTI’s.  Then at 10 years of age he had a bowel obstruction that perforated and he went into septic shock.

They operated, giving him little chance to live, and removed five inches of the small intestine and did an ileostomy.  They reversed the ileostomy five weeks later and surgically repaired another bowel obstruction two weeks after that.  He was in the hospital four months straight.  During this time his stomach stopped emptying (gasteoparesis); he was on TPN (nutrition through an IV and eventually a PICC line) for 6 months.  Then he was switched to a g/j-tube where he now gets all feeds directly into the intestines, by-passing the stomach.  He has since had 7 more bowel obstructions.  We decided on no more surgeries after the third bowel surgery, so these last 7 obstructions thankfully were resolved without surgery!!

Developmentally he is like a four-month old baby.  During his first surgery when he was 3 years old, he basically died.  They obviously got his heart started again and breathing, but he lost some of his physical abilities and has never been the same.  He never was able to even hold his head up for more than 20 seconds, couldn’t sit up, crawl, etc..  He was able to use his hands to play with toys and help us feed him by holding the spoon and taking it to his mouth.  He couldn’t do any of that after this surgery.

We are still so thankful that God kept him on this earth, but obviously a little sad at what he can no longer do.  His decline over the years has left him bedridden; he does have a wheelchair that he can sit up in for short periods of time.  He has a dislocated hip, contracted legs and had a broken femur last year.  Lots of GI (feeding) issues, chron’s disease, scoliosis, seizures (on six seizure meds daily) and legally blind.  The list goes on; he keeps us busy!

Jonathan is the heartbeat of our family!  He is such a precious addition to our gang and I don’t regret one second with him.  Every morning I wake up and greet Jonathan with kisses (he has nurses that care for him overnight) and thank God then and there for the gift of another day with Jonathan.  We constantly are praying for God to preserve Jonathan’s life and keep him with us every single day He ordained for him to be here and as long as he is happy and has a good quality of life (relatively pain free).  We trust God’s timing and are thankful He chose to keep him with us for this amount of time.  He is breaking all the records in the medical journals for full trisomy 13’s!!

Donna McGinnis