“…this one is going to be really special.” If he only knew!!
Samuel Jackson, Mosaic Trisomy 13, 11/28/1998, Milan, TN
Samuel was a surprise in every sense of the word. My husband, Tim, and I thought our little family was complete. We had 2 sons, just built a new house and were settled in our careers when we found out we were expecting a 3rd child. I remember sitting in my doctor’s office asking him how this could possibly have happened after struggling with infertility and going through uncomfortable procedures and taking medication to have our other 2. He just smiled and said, “I think you know how it happened.” He tried to be encouraging, saying he was very thankful that his mom had 3 children, since he was her third. After the shock wore off, we were actually excited and Tim said, “this one is going to be really special.” If he only knew!! I developed preeclampsia suddenly at 33 weeks and was hospitalized. After 3 days, my blood pressure and swelling decreased a little and I was sent home, only to be awakened by a horrific headache the next morning. My doctor told Tim to get me to the hospital and I was immediately started on magnesium sulfate to prevent seizures. It was decided that the best option for me and the baby would be to deliver and so at almost 34 weeks gestation, no November 28, 1998, Samuel Kennedy Jackson entered the world weighing 4 lbs, 7 1/2 oz. He was breathing on his own, but of course went straight to the NICU because he was early and needed monitoring. While in the NICU, he struggled to keep his blood sugar up and was jaundiced. He was being fed through a NG tube. He looked perfect, except I wasn’t used to small babies. My oldest weighed 10 lbs and my second was 9 lbs 6 oz. I also noticed that he was “tongue tied” which I thought was kind of neat because I was too when I was born. Another “difference” was his extremely small boy parts. He had a few small hemangiomas at various locations on him as well. Non of these “abnormalities” would be cause for alarm if only one were present, but combined, could indicate a genetic condition. The doctors never discussed this with me as a possibility however. One nurse asked me if any genetics testing was being done as she pointed out these anomalies. We stayed for 10 days and then were sent home, with no farther discussion about chromosomes. Samuel had feeding issues from the start. It would take him forever to take 1-2 ounces of milk. He was not gaining weight and we also noticed he had a keyhole shaped pupil in his right eye (coloboma). His pediatrician became concerned that we were dealing with some kind of syndrome and we were admitted to LeBonheur Children’s Hospital in Memphis TN for genetics testing. They did bone scans, xrays, ultrasounds of all his internal organs, eye exams…you name it, they checked it. He was 6 weeks old when the testing was done. While in the hospital, we discovered he had a severe UTI and our 3 day stay turned into 13 days. We were still in the hospital when the preliminary results came back revealing the diagnosis of mosaic T-13. Because Sam was 7 weeks old, they really couldn’t tell us he wasn’t going to make it. We decided then that we would do all we could to fix what was fixable and help him manage the rest. Sam got (and still gets) PT, OT and speech therapy. He sat up at 18 months, crawled at age 2 1/2 and walked unassisted at 4 1/2 years. It has been a roller coaster ride for sure, but I would do it again and again as long as I got to spend it with him. I would have to say the first year was the roughest. Everything was new. He had breath holding episodes where he would cry, hold his breath, turn blue and become unconscious. I had to give him rescue breaths more times than I want to remember. But, he always came back. He has had several surgeries to fix reflux, put in a g-tube, remove his tonsils and adenoids, reconstruction of his urinary track, inguinal hernia repair, Achilles tendon lengthening, and most recently bilateral femoral osteotomies to fix his hip joints. Samuel loves life, loves to go to church and loves to go to football, baseball, basketball and softball games. He is so much fun! He will laugh hysterically when something funny happens on TV, or in real life. He can swim like a fish…I swear he would live in the pool if we let him. He attends school daily. He is enrolled in a public high school in a self contained special ed classroom. His daddy happens to teach at that school as well. Samuel has made me a better person. He has taught us acceptance, patience and how to love unconditionally. His 2 older brothers, Luke and Noah, adore him, and the feeling is mutual. Because of Sam and the other SOFT children, we have made life long friends… people we would have never had the opportunity to know if it wasn’t for our children bringing us together. Our life is very different than it would be without Samuel. We can’t go and do at the drop of a hat like most of our friends, but that’s OK. We accept that. We embrace that. And we wouldn’t change that.