Owen's Story: Parent's Letter Project Congential heart defect- Owen's parents

Currently, Owen is 3-and-a-half years old and full of a zealous energy. It amazes me when I think back to the day he was born and the shocking news that followed. I was considered high risk during Owen's pregnancy, so I was required to have constant Level 2 ultrasounds. No issues were ever detected, so when he was born and looked perfectly healthy, we were thrilled new parents.

He was soon checked out by his pediatrician in Delaware who noticed a severe heart murmur. We were told not to worry, and some tests would be run the following day if his murmur didn't sound better. His murmur was still severe so an EKG and echocardiogram were ordered which determined Owen had aortic stenosis. His aortic valve was mostly sealed and the heart had to pump extremely hard to get blood through the valve. This caused the left side of his heart to be enlarged as any muscle becomes with an excessive workload.

My husband and I felt the rug pulled right out from underneath our feet. We were in shock. What does this mean for our new baby? How serious is the condition? Can we even bring him home? Our heads were swimming with questions and concerns. Luckily, a doctor from Children's National was doing a rotation at our hospital in Delaware. He reviewed Owen's results and stated that a surgery would be needed to relieve the pressure on the valve, but, we probably had six months before we would have to worry about it.

He had constant check-ups and monitoring and just to be safe, my husband and I scheduled an appointment for a second opinion with the children's hospital in Delaware when Owen was two months old. Owen was suffering with a horrible case of colic and had finally started to be able to get some rest, as were we, so we assumed things were great. The doctor who examined Owen for his second opinion became extremely troubled with the readings from the echocardiogram. He stated an emergency surgery needed to be scheduled and we needed to head to the hospital right away. I thought to myself, what are you talking about!?… He is fine, he's finally happy and sleeping, did you misread the test somehow? I asked him if I had time to run home and get some things packed and he said, “If you do that, your baby could die!” I was frozen, I couldn't think straight and I couldn't comprehend the gravity of the situation.

When I was able to regain my thoughts, I called Owen's pediatrician with my concerns. Owen was happy and not showing any signs of his heart failing. We had been watching so closely for those symptoms. We thought we had months until he needed a surgery and now we are being told that he will die if he doesn’t have surgery immediately. What do we do? He suggested that we get a third opinion and contact Susan Cummings, MD, at Children's National in the Annapolis Regional Outpatient Center. She cleared her schedule to see us as soon as we made the trip to her office. She ran the same tests and very calmly and compassionately repeated that his results were very severe and he needed an immediate surgery. She gave us the information in a way that we could understand and even gave us a big hug after delivering the terrifying news. She set everything up so that all we needed to do was drive to the main hospital in DC and check in.

Owen's surgery was a complete success and he is still being monitored every 6 months. He may still require more surgery as he and his heart continue to grow. We spent Owen's first Thanksgiving in the hospital while his heart was being repaired. When I think of Dr. Cummings and the wonderful group of doctors on the Cardiology team, it gives a whole new meaning when I give thanks. We are so thankful that we chose the remarkable doctors at Children's National to care for our son. The compassion and care that were given not just to Owen, but to our entire family, is something we will forever be grateful for.

If you have found yourself in a similar situation with a child who has a heart condition, rest assured that you have made the right choice with Children's National Medical Center.

Sincerely, 

Owen's mommy and daddy

Treatment Team

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