Dear parent of a child born with aortic coarctation,
If I could help any other parent who is in a similar situation to ours, I would very much like to do so.
My son Samuel is a fraternal twin and was born at 36 1/2 weeks. He spent 10 days in the Neonatal Intensive Care Unit (NICU) with little incident. He was there until he could feed properly. We came home at the 38 week mark.
We went to the pediatrician for their one week wellness visit and she noticed that Samuel was in distress. We live 15 miles from the doctor's office and he was fine when we got in the car, but we noticed his coloring was off when we got to the pediatrician's office. As soon as the doctor saw him, she called an ambulance and we were taken to the hospital Emergency Department (ED).
The local pediatirican and neonatal doctors stabilized him and then we did "telemedicine" with a physician at Children's National. What a relief for them to review the echocardiogram in real time and provide us with possible answers. Because we live north of Washington, DC, and we were now going into the 3pm hour, Samuel was airlifted to Children's National.
I was hysterical. I had another twin at home who was only 3 weeks old. Samuel was being taken by helicopter to a hospital 75 miles away and I could not go with him. We arranged care for Jackson (his twin) and then we drove to Children's National. I was still breastfeeding and was pumping in the back of our minivan on the Beltway. When we arrived, our social worker was so nice and sweet. She got us settled and answered all of our questions.
We met with Jai Nahar, MD, and his team, he was so very calming and nice. Everyone who assisted us was incredibly understanding. Samuel was taken to Intensive Care Unit (ICU) and was put on a ventilator until surgery. He was diagnosed with aortic coarctation (exactly what our pediatrician and the Children's National physician had determined through telemedicine). Sammy had to wait four days for his surgery. Every single person including the ICU nurse, the technician who took blood, and the anethesiologist were so understanding, patient, and kind to me.
I had several miscarriages prior to having my boys. I was post-partem and basically a wreck. As the week went on and the nurses, staff, even the housekeeping team, supported me, I began to manage my emotions better. The absolute worst part was seeing my 3-week-old son on a ventilator.
Dr. Moulick performed his surgery. I met him before he performed the operation. He was very nice and very funny. I was impressed to learn that his reputation was so outstanding.
Sammy came through the surgery with flying colors. He was in the Cardiac Intensive Care Unit (CICU) for about a week and then was moved to the recovery wing. He was only in the recovery wing for a few days before coming home. I think he came home because the nurses could not handle his crying. He had the loudest cry in the entire wing, pretty amazing for a little guy who had been on a ventilator five days prior.
He has a few underlying issues that we are keeping an eye on and we do follow-up visits with Dr. Nahar every 3-4 months. Sammy is almost 2 years old and is in the 25-50th percentile on all of his measurements, he is advanced on all of his development milestones.
I don't know what would have happened if we were not blessed to live in an area with outstanding pediatricians and in such close proximity to Children's National Medical Center. Having access to a hospital where the people only work on children and understand the emotional toll the parents endure is a Godsend.
Thank you for letting us share our story.
Sammy's Mommy & Daddy