Christian's Story

My son Christian was born July 3, 2004 and he was born at 32 wks. He weighed 3 lbs 2 oz and was 16 and a half inches long. He stayed in the NICU for about a month and a half. I was given 2 steroid shots to develop his lungs and he only needed oxygen for the first few hrs after birth. I knew before he was born that he had a heart condition called tetralogy of fallot and that he would need surgery. I didn't feel him moving when I woke up one morning and he hadn’t moved the night before...he always moved at night. The saying about God gives us a mother's intuition is very true. I knew I had to get to the hospital cuz something was wrong. Sure enough when he came out he was blue and the cord was wrapped around his neck, arm, and leg. The dr said if I had waited any longer to come to the hospital he would have died. When he came home from the NICU he had acid reflux which made things worse because of his heart condition. He would have blue spells(tet spells) every day just about 3 or 4 times a day. He couldn't breathe and sometimes would turn pale. It was literally like he died and came back. He was on a heart monitor that beeped every time it happened. Finally, at 7 months he had gained enough weight to get the heart surgery. That went well but a week after the surgery his left lung filled with fluid and he had a lot of breathing problems. He had to get a tracheostomy to help him breathe and had that for 2 yrs. He's now 6 and throughout his life he had to have multiple surgeries. He had hypospadias, which is where his hole on his penis is in the wrong place so they had to reconstruct that. They had to drop his testacles(they were undescended because of his prematurity), and he had kidney reflux, so had surgery for that. He had tubes in his ears and he wears glasses and hearing aids. Some drs said he may never talk or walk and he does both. He's in school and does ST, OT, PT, and works with a hearing aid specialist at school. He also has a very rare chromosome deletion. It's a partial deletion of number 7 and his drs have said that he is the ONLY person EVER in the whole world with this deletion. The only thing that they suspect is that it affected his internal organs. His geneticist in Jax FL is writing a paper on him. Since there's nothing documented in medical textbooks we are hoping that someone somewhere has heard of his particular deletion. He is extremely intelligent and extremely musically inclined. He has developmental delays but he has come such a long way. He also has an extra bone in his toe, which is unheard of, and may need surgery in the future. It's in both of his big toes so they're kind of bent. But he walks just fine. Since he has been taking ST and gotten his hearing aids his speech has improved dramatically. He also has what the drs call a thin membrane in his heart that is also very rare and may need surgery on that. His airway is still small for his age and he is still a pretty little guy. But his drs say he's normal on the growth charts. He's 6 and weighs 44 lbs. He has been thru so much but is def a survivor! I also forgot to mention that since he had the hypospadias and the undescended testicles(can be referred to as ambiguous genitalia) when he was inutero the penis looked like a vagina. So the dr said 99.9% positive it's a girl and needless to say we bought all pink, including pink dresses lol! Even when he was born they had to run tests to make sure he  didn't have any female parts internally and he didn't. His penis looked completely normal and you could clearly tell he was a boy. But since they still wanted to run their tests he didn't have a name for a little while and was the only one in the NICU who didn't have a name. Finally, when the results came back that he was all boy my dad came up with the name Christian! And one last thing...God truly does work in mysterious ways. After my son's heart surgery, he had another blue spell. He was intubated and after about a week or so they were going to extubate him. His main dr(which was awesome) said he was driving over the bridge to work and had his hands on the steering wheel and said something told him(GOD) to call the hospital ASAP and tell the drs to not remove the breathing tube yet. They didn't and later when they tried to remove it he was having significant breathing problems. His dr said that it was such a close call because of all the years he's been in practice he never saw a child as blue as Christian was. So after all that they realized that he needed the trach. He still has quite a road ahead of him but he is truly a living miracle! It’s hard to believe that 6 yrs ago I thought he might not survive. God is great and does answer prayers! I have learned thru all of this that we must thank God for every breath we take and to never take anything for granted. Sometimes the small things are really the big things!