Jonathan's Story
written by mom Laura

On January 9th, 2000, I found out that I was pregnant with my fourth child. I was very scared to learn of this pregnancy due to the fact that I had lost baby number three only five months earlier due to a miscarriage. The night that I found out that I was pregnant, I immediately prayed that this baby would be safe and healthy. I was working in labor and delivery and knew of all of the things that could possibly go wrong. I called my husband who was also working third shift that night and told him the good news. He was very excited but apprehensive also.

During a routine ultrasound at around 20 weeks into the pregnancy, we were told that it was a boy. My two other children, Brendan and Stephen, were in the room with us. We were all so happy! The pregnancy itself was not that hard on me, but there were many times that I thought that I was getting ready to lose my baby. For some unknown reason, I started bleeding about week eight and this continued until I was twenty-three weeks pregnant with him. My doctors had me come into the office for more office visits than were the norm, but my baby continued to grow.

He continued to grow so much that my doctors were afraid that we messed up somehow on his dates and that I was further along than we thought. At one office visit, my primary doctor decided that maybe we should induce the labor and get things rolling "so that we don’t have a fourteen pound baby with two teeth to deliver." I was tired of being pregnant and my back and legs hurting all the time that I was only too happy to hear her suggest this.

Jonathan was born on August 24th, 2000 at 36 weeks gestation weighing in at a whopping eight pounds, eight ounces. He was twenty-one inches long with beautiful blue eyes that never changed colors. He had difficulty breathing from the very beginning, but within thirty minutes, had stabilized enough for them to discontinue the oxygen. He got to come home with me on day three.

Jonathan was a great baby and a total delight to have around. His first hospitalization was when he was two weeks old. The doctor’s admitted him for respiratory distress. This was the beginning of MANY hospitalizations. (We were at around thirty-six and counting at the time he passed)

On one of these hospitalizations, we were told that he was having reflux problems with his feedings. We had to thicken everything that went into his bottle almost the consistency of honey. He continued to measure in at the 95th percentile. His pediatrician began to think of some sort of overgrowth syndromes to explain his "heftiness".

When Jonathan was three months old, we noticed that he didn’t hold his head up the way that other babies do. We talked it over with his pediatrician and began making the trips to see different doctors about this time. Along with the multiple hospital admissions for respiratory problems, we noticed that Jonathan was very "floppy" and was having problems eating and keeping things down after finishing his bottle. We went to many different doctors here in Asheville, seen doctors in Charlotte, Duke University, and Emory University in Atlanta, Georgia. Last year alone we went to St. Louis Children’s Hospital and Boston Children’s hospital. If we thought that a doctor was there that could help us identify what was going on with Jonathan, there was no trip too far. We were told in Atlanta that Jonathan had Simpson-Golabi-Behmel syndrome. It seemed to fit the pattern of some of the characteristics that he showed. It is a very hard syndrome to research due to there not being too much studied about it. It was not an easy diagnosis to hear, because fifty percent of these children do not live past six months. This is when we were first put in the mindset that we may lose this angel quicker than any of us were prepared for.

"Well, the tests on SGBS are negative." is all that I really remember one of the doctors telling us. Well, what does that mean? Does this mean that we should be thankful, or are we up against something even worse? We continued to see doctors all over the country. In all of these doctor visits, there had not been one doctor that could identify what is going on in his body. He has had two muscle biopsies, numerous EEG’s, EKG’s, spinal taps, MRI’s and tons of lab work drawn. We figure that it is something genetic, but know that we may never have an actual diagnosis.

Jonathan could not talk, walk, sit, crawl or communicate verbally with us. He showed us that he was happy by the incredible smile that he gave to us and the way that he signaled HAPPY. For Jonathan, he would flap his hands on his chest and almost had a giggle. He was globally developmentally delayed and got all his nutrition by form of a G-tube. We had to quit giving any form of food orally in March of 2003. He had scoliosis (which was last measured at 70 degrees and with his lung function there was nothing that they could do about it surgically). Because his back was so curved, it seemed to damage his left lung to the point that the right one had to do all the work.

Jonathan could not be put under any form of anesthesia due to the risk associated with it. We were told in June of 2002 that we had a year with him. In September of 2002 after having another EEG done, it showed that Jonathan’s brain wave pattern was slowing down and was "abnormal" even for him. Jonathan had been on oxygen since June of 2002 and in November of 2002, was placed in an iron lung. He had to spend ten to twelve hours daily in this. (He usually sleept in it for all of his allotted time). To make it more "Jonathan friendly" we decorated his bedroom with Buzz Lightyear things and purchased him some sheets that glow in the dark. We told him and our other two children that Jonathan was a rocket man and this was his spaceship. It helped in the day-to-day coping that we all had to continue to do, as we knew that our time with him was limited.

In March of 2003, we were sent to Orlando, FL for Jonathan’s Make-A-Wish trip. What an incredible experience it was for all of us. We got some incredible memories of this trip and were able to get beach pictures of Jonathan splashing his toes in the sandy waters. Three days before we left on this trip, we were told that Jonathan had pneumonia. I questioned whether we should go or not, and the doctors told me we should go and have a good time. We could always call if there was trouble. Hospice had been an incredible amount of support for us as we were preparing to say goodbye to this angel that we have known and loved for two and a half years.

No one could ever love this little guy more than we do and we are very thankful to have had him in our lives, no matter how short that time ended up being. We continued to pray and enjoy each and every day.

On Saturday, April 5th, 2003; my Jonathan got his angel wings. I was holding him in my arms, and had just told him that our preacher was here… and then I felt him leave. It was storming all morning, raining so hard and the thunder and lightning was terrifying, yet when Jonathan went to Heaven to be with Jesus, within minutes, the skies cleared away... It was peaceful to say the least as I look back on things now.

Jonathan had a seizure on Wednesday, April 2nd. It was the first one that he had ever had. By the time that the ambulance got him into the emergency room and our pastor walked into his room, Jonathan was laughing and playing; almost as if, "see what I had to do to get you here?" On Thursday, the following day, he was really sleepy and pretty much out of it. He was not his laughing/playing self. He had started to get this pretty terrible cough. Thursday night, I guess that I just knew that it wasn’t going to be too much longer. I can’t really express to you HOW I knew, I just did.

Friday morning, Jonathan was not that responsive to us. I could tell that when we talked to him, he tried to open his little eyes. His pediatrician came to the house to give him some Lasix to help with his little body swelling. His kidneys had started their final shut-down phase and I knew that today could be the day. I brought in Brendan and Stephen (my two other children) and told them what was happening. Since hospice had been involved with us, we were able to start morphine here at home to keep him comfortable. All Friday night, as me, my mother in law, my husband and close friend kept watch over him, my baby fought to catch each and every breath. When Karen and I would hear him struggle, we would just look at each other and cry… he had been such a fighter for two and a half years now, and he didn’t know any other way to do this….. With much love surrounding him, Jonathan left my arms to run into the arms of the Heavenly Father on Saturday, April 5th , 2003 at 8:37am. My one source of comfort is knowing that he is laughing, running and talking SOMEONE’S ear off…. He also has met up with one of the most amazing friends that he could ever have, Hannah S. (Apr/01 Angel Kid).

I love you so much, Jonathan. And I can’t wait until God calls me home so I can touch your beautiful face again…. Go play now, sweet angel and you and Hannah behave, OK?