Christian, born 2007

My son, Christian, was born on February 7th, 2007. At the time of his birth my OB noticed Christian had a fairly loud murmur but didn't have the special equipment needed to diagnose him so they suggested we book an appointment at Boston Children's Hospital upon discharge. They made it seem like it was not a big deal but was starting to wonder if they really felt that way or if they didn't want to alarm me.

 

We arrived at Boston Children's Hospital that day and they ran a number of tests including an echocardiogram which showed Christian's little beating heart. It seemed to take forever and I had a dreadful feeling something was wrong, I guess a mother's instinct. Our soon to be cardiologist came in shortly after and told us Christian had a heart defect known as Tetralogy of Fallot. I was heartbroken and couldn't stop crying. It seemed like such a normal pregnancy and there were no signs at all something was wrong until after birth. The pediatric cardiologist informed us Christian would need heart surgery within the next few months of life and told us certain signs to look for until his heart was repaired. The next few months were nerve wracking. I didn't know what to expect and how I would react if he had a TET spell.

 

Four months later on June 1st, Christian had his heart surgery; the surgery lasted about 4 1/2 hours which seemed to take forever. The nurses were wonderful and kept coming out to update us on his Christian's condition. I was so relieved when his cardiologist came out and said Christian was doing well and later we met with his surgeon. These surgeons are so skilled and wonderful and hold these little lives in their hands. We spent a week in the hospital and Christian seemed to bounce back to his old self quickly.

 

We later got a call that his test for DiGeorge Syndrome came back positive. I felt that things couldn't possibly get worse. But I felt that at least the worst was over and this we could deal with and manage. The only thing so far is he has a few learning set backs which he meets with an early intervention once a week and he has some swallowing problems such as thing liquid aspiration so I need to thicken all his liquids. Other than that, he is in the 50% percentile in weight and growth and he is learning new things everyday. It is an illness that is day by day and we will not know what to expect. We just had his post echo almost a year after surgery and everything looks great and seems to be growing with his body. Such great news!!!

 

I used to wonder why God would give me a baby with all these problems but I know he sent me my little angel for a reason, and I couldn't ask for a more delightful little guy.

 

Story by Christian's mom, Erika - Massachusetts