Feb. 3-CHD Awareness Month- Will's Story
I met this sweet family about a year ago. They were the only family to show up at our family It's My Heart Picnic in the Park here in Atlanta. We had a great time sharing stories about our journey with CHD. Will is such a fighter and his big sister pretty special too!
This is Will's story-
We went for our 20 week ultrasound excited to find out if we were having a boy or a girl. My parents had come along to share in the excitement. As I laid on the table and the nurse let us know that we were going to have a boy, she pointed out that she saw something on the ultrasound and she wanted the doctor to look at it. The doctor came in a few minutes later and let us know that something didn’t look quite right with the ultrasound and that he wanted us to hang around and talk with the cardiac specialist that was in the office that day. It took about an hour to get in with the cardiac specialist, but he basically said that my son’s heart had something wrong with it and that we would have to monitor it the entire pregnancy. All he could identify was a hole is his heart and a possible valve problem. My heart sunk knowing that my perfect baby boy had something wrong with him and I wasn’t even sure exactly what was wrong. I have never cried so much in my life and my whole family was heart-broken finding out the news.
Over the next 4 months I had numerous cardiac ultrasound appointments to monitor my son’s growth and the development of his heart. Each appointment was exhausting and nerve wracking worrying about what else the doctor’s may find wrong with my son’s heart. His diagnosis went from just a hole in his heart with a valve problem to include a problem with his pulmonary vein and a possible interrupted aortic arch.
At one point in the process of monitoring the cardiac prognosis of my son’s heart the doctors informed us that about 50% of the time heart babies can have a syndrome known as Digeorge syndrome. I was crushed thinking that I would have to deal with all this at one time and still try to raise a baby. I am the type of person that has to know so we had an amniocentosis done so we would know exactly what we were dealing with. Thankfully the test showed that his genetic makeup did not show the chromosomal deformity.
My son was born August 11, 2011 and he was a healthy 7lbs 1 oz and 20 inches long. He looked completely healthy and no one would have known otherwise if it wasn’t for the massive amount of doctors and nurses in the delivery room awaiting Will’s arrival so they could scoop him up and take him to the ICU. I think we got about 10 minutes with him as best I remember since it was such a whirlwind. We barely had time to get just a few pictures before he was taken away.
The cardiac doctors had informed us that until he was born they would not know the full extent of his defect. It took over 3 hours before the doctors were able to inform us that he did in fact have the interrupted aortic arch in addition to a hole in his heart, a small valve leading from the heart to the aorta, a problem with his pulmonary vein, and stenosis (narrowing) of his aortic arch.
He was transferred to Sibley Heart Center when he was only a day old and his big sister got to meet him for the first time that day. I think that was one of the hardest parts of the whole experience. I didn’t get to let my daughter have that special moment with her baby brother after he was born, she had to look at him through his travel capsule and she couldn’t even touch him. It broke my heart again.
We waited several days once he got to Sibley to find out when his surgery would be performed. He had the surgery when he was 6 days old. It lasted 6 hours and thankfully it was completely successful. Dr. Kogon performed the surgery and he called it a complete repair of his heart. Will stayed in the cardiac ICU for 7 more days and then he was transferred to the step down unit where I was able to spend the night with him, which was the greatest gift I could have had at the time. I had to learn how to use the feeding tube and care for his wound correctly. He did so great with his eating and recovery that we were able to go home after only two days here.
We have had several follow up appointments with the local cardiologist and thankfully each one has gotten progressively better. This last visit in November, the doctor told us we could go another 9 months before he needed to see us again and that his heart had grown enough that his stenosis has improved a good deal.
We have had to involve a physical therapist after my son wasn’t able to sit at 6 months of age and was falling behind on his gross motor skills. It has been 10 months that we have been working with her and Will has mastered sitting, crawling, cruising, and now walking. I never knew how far behind he was until the therapist intervened. The therapist feels like by the time Will turns 3 years old he will be at the same point as other children his age.