Dylan C.'s Story: Parent's Letter Project Critical congenital heart defect (CCHD)- Dylan's family

Dear parents of a child with a congenital heart defect,

If you are reading this letter, you are probably scared, you are probably curious and you are probably reeling. This letter will not fix the crisis that you and your family are facing, but hopefully it will give you some brief shelter from the storm. It is my experience that I am stronger when surrounded but others who have gone through similar situations. I rely on other people's experience, strength, and hope; and it is my great hope that you will too. It is the only way that I have survived this. 

During a routine ultrasound at 13 weeks my obstetrician (OB) found our baby had a spinal anomaly. I was referred to Children's National Health System in Washington, DC, to have a more thorough ultrasound. After our initial scan at Children's National they told us that Dylan had what was called a hemi-vertebrae. Everything else looked normal and he continued to grow as expected.

We were followed at Children's for the rest of my pregnancy, but because this abnormality was not life threatening and everything else looked fine, I was cleared to deliver at the hospital of my choice. Dylan was born on Thursday, December 6, 2013, at a local hospital in Silver Spring, Md. He was full term and had an unremarkable delivery. There was a neonatologist present because of the hemi-vertebrae and she said that he was perfect. We then had two "normal" days in the hospital and were gearing up to go home. Early on Saturday the on-call pediatrician informed us that Dylan had an abnormal critical congenital heart defect (CCHD) screening result from a pulse oximetry test that measures the oxygen saturation in the blood. His saturation was 100 percent in his upper extremities and between 82 percent and 86 percent in his lower. She was not overly concerned but wanted to be sure and asked that we stay to have an echocardiogram (echo).

Within five minutes of the echo being completed, Dylan was whisked away to the Neonatal Intensive Care Unit (NICU), and within a few hours on to Children's National. My mind was spinning. We were packed, and supposed to be going home, but now Dylan would have to have open heart surgery or he would die.

I was alone when I heard this news as my husband left to care for our other son. As I sat in the conference room with the neonatologist, my husband on speakerphone, listening to him explain what was wrong and what they were doing, I thought, "This cannot be my life." Just a few hours earlier, everything was perfect, and now our sweet baby was going to have major surgery.

Dylan had an interrupted aortic arch (no oxygenated blood was traveling to his lower extremities) and an aortopulmonary window (a hole between the pulmonary artery and the aorta). Luckily, there is a vessel that is open in utero and closes soon after birth (the ductus arteriosus "DA") that for some reason did not close that quickly. This was the only way that any blood was reaching the lower part of Dylan's body, which was a very good thing. A miracle drug called Prostaglandin kept this tiny vessel open and Dylan alive until he could get into surgery.

On Thursday December, 13, 2013, seven days after he was born, Dylan had open heart surgery to repair the defects. We left Dylan in the pre-op area with the anesthesia team around 8:15 am and then we waited. We were given a pager and were able to wait back in his room in the Cardiac Intensive Care Unit (Cardiac ICU). They sent four updates, and at 12:26 pm we got a text that he was off bypass and his surgeon, Pranava Sinha, MD, would be out soon to talk to us.

Those four hours were the longest and most stressful of my life. Dr. Sinha said that Dylan did great; but that the next 24 hours were going to be the most critical and if he made it through the night he would feel much better about his recovery. The next 24 hours were indeed hard. All of the moments of the past week that I thought were bad (including waiting during surgery), were nothing compared to this. I had to be sent home from the hospital because I was unable to handle the ups and downs in the 24 hours after surgery.

Dylan also is incredibly strong. He fought and survived. He was in the hospital relearning how to breathe and eat for another 15 days, and finally on December 30th we were released from the hospital and headed home!

Dylan is amazing. He is a sweet and happy little boy. If you didn't know his history or ever see his scars, you would never guess what he went through. At his last check-up with his cardiologist I cried when the tech showed me his wide open aorta - I had never seen anything so beautiful in my life. Mary Donofrio, MD, his awesome cardiologist, said that everything was great and his heart is fully repaired. She told me that all I needed to do now was to love him, watch him grow, and see her in a year.

It is frightening to think that if I had delivered in DC, where I live; this story could be very different. The CCHD screening is not yet required in DC hospitals (as of 11/21/13) and Dylan would most likely have been discharged. If he had been discharged, he would have progressively gotten sicker and either would have died of heart failure at home or have limited options because of the stress to his heart/body.

We are very thankful for the on-call pediatrician who decided to keep us at our delivery hospital and follow the newly implemented protocol. The CCHD screening told her there was a problem, and she acted. We are grateful for everyone who has worked so hard to get the CCHD screening legislation passed in 33 states (20 states in just 2013) and legislation is pending in other states like Pennsylvania and Virginia where nearly all hospitals are screening even though there is no mandate at the state level (as of 11/21/13). I can’t possibly say this enough or more loudly; the newly mandated CCHD screening saved Dylan's life.

The screening caught the problem, but the staff at our local hospital and Children's National got us to the finish line. I cannot say enough good things about Children's National. We felt incredibly supported throughout our entire stay there. The front desk staff in the Cardiac ICU were always happy to see me and when I visit the hospital, Ms. Tony always lights up and gives me a big hug. The heart team at Children's National was excellent. We felt like we were in the right place and our son was in the right hands. There is no substitute for this . . . none.

I was not the easiest mom to have around, and they were just awesome with me. I was there every day for rounds and the doctors and nurses not only answered all of my questions, but they actually engaged me and welcomed my opinions on his care. When we were out of the Cardiac ICU and into the Heart and Kidney Unit (HKU) for the balance of his recovery, I was a crazy person about getting him fed and out of there. I am sure that I drove the nurses and nurse practitioners bananas with all of my requests and demands for him to be able to rest. Through it all though, we felt loved, we felt supported, and most of all, we did not feel alone.

If I can give one piece of advice it would be this: be your child's advocate! You are their voice; they are depending on you to be there, be informed, and protect them. The language is different and everything is strange and new, but you must learn. Make knowing what is going on your job. The doctors and nurses are amazing, but you are your child's mother, father, or caregiver, and you know your child better than they ever could. If something does not feel right, say it. Write everything down. You cannot possibly remember it all and you will want to have a record. Ask a zillion questions without worrying you might sound dumb or you are being annoying. I think this is how I managed to get through this ordeal; facts were my life preserver. I hung onto them until I could hold onto my son again.

I hope that our story will help you in some way. I hope that it has eased your burden if only a little. If you are at the start of your journey, it may seem very long and dim at the moment, but there is light. It sounds silly and cliché, but it is true. There are many steps to take along the way but as long as you are putting one foot in front of the other you will be moving forward.

Sincerely,

Dylan's grateful family, Michele, Travis, and big brother Davis

Treatment Team

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