Carter's Story
Our son, Jared Carter Berg, was born on May, 8th 2006. His older brother Jacob’s birthday is May 6, 1999 and Daddy’s birthday is May 7, 1951. Carter also has an older sister named Paige.
When Carter was entering this world, it was not the typical delivery, he caused quite a stir by needing oxygen, therefore Mommy needed oxygen, there started to be panic in the room, as Carter simply was not getting enough oxygen and he still was inside of Mommy, when he finally decided to enter the world, he was a very dark purple. The mood in the room changed immediately as there were some complications with Mommy during delivery but they let me hold him briefly.
As I was finally wheeled out of the delivery room and passing the room where all of the newborns are placed, the first thing that I noticed was that our Pediatrician was looking at him from way across the room, with a questioning puzzled look.
I asked my husband to go get me something to eat, and of course my pediatrician came in with the same puzzled look, I asked him if the baby was okay, and he said I think your child has Trisomy 21, there left by myself to collapse, and then have to tell my husband. It took me about 45 minutes, to gather myself and say, look you can either curl up into a ball and feel sorry for yourself, or you can go and get your baby and put him on your breast.
Off I went to start the bonding process with my beloved Angel. All was seemingly going well, until we were about to be discharged and I was told that they found a murmur and we would need to be seen by Cardiology at Texas Children’s Hospital for an echocardiogram.
I was told that millions of people have heart murmurs and live very long, active healthy lives. This was not going to be Carter’s case. I thought that we would get the echo done, they would put him on some medicine and off we would go to start living our life as a family of five now.
We did not leave Texas Children’s after that first echo, our Deacon from our church rushed to baptize Carter, because he would be heading into emergency heart surgery. He was too fragile to go home, he would not make it..
Carter was found to have complex congenital heart disease including aortic arch hypoplasia with severe preductal aortic coarctation, large ventricular septal defect, and small atrial septal defect. The Doctor’s felt that the constellation of problems required a one-stage complete repair.
The first year of Carter’s life, we spent approximately one week per month at Texas Children’s one stay was the entire month between Thanksgiving and Christmas.
Carter is doing remarkably well now that he has turned three years old, all of his medical team had told me from the beginning, if he can make it to three years old, he will be out of the woods.
What will not ever change is the abandonment that my two older children felt and feel, with the absence of their Mother for such long periods of time. At times, they feel like second and third fiddle, because of the constant care that Carter still continues to need, all of the therapies and monitoring for his health.
The dynamics of our family have changed, they love their little brother, but they have lost a lot during the first three years of Carter’s life, their most formative years.
Although there have been remarkable advancements for CHD, there is still so much work to be done.
God Bless,
Susan, Mitchell, Paige, Jacob and Carter Berg