Our Letters of Hope

Andrew was born February 4th, 2008 during a blizzard in Des Moines, Iowa. Family members drove through snow and ice at 3 o'clock in the morning to be there for his birth. When Andrew finally made his debut everyone was very happy they made the dangerous trip to greet this health, beautiful baby boy. Grandparents, Aunts, Cousins and close friends all shared their love with the newest member of the family. One by one they left the hospital to head home after a long day. And we all worried about the weather.

The next morning I was in my hospital room alone carefully inspecting my new son when a nurse came in to take him to the nursery for some tests. I thought nothing of it because I was told pediatricians would check him out every morning to make sure everything was going well. The next few hours of that day changed my life forever. Before Andrew was returned to me a Pediatric Cardiologist (Dr. Mooradian) came to my room and said we needed to talk about Andrew. He wanted to wait until my husband got back to the hospital, but knowing he was about to tell me something bad, I thought I could handle the news alone… I could not have been more wrong.

The doctor told me Andrew had a Congenital Heart Defect called Tetralogy of Fallot. Honestly it took me about three days to remember how to pronounce that properly. I was told Andrew would need to have open heart surgery by the time he was 6 months old to correct the defect. I then asked the doctor what would happen if he did not have the surgery. He simply told me, "He will go into Heart Failure and he will die by the time he is 12 months old." From that point on I heard nothing. The doctor left the room and I fell apart. I had been a mom for fifteen hours and I had no idea how to feel, react, I didn't know what questions to ask, I was totally lost in fear. When my husband arrived, one by one, we called our family to return to the hospital to be with us and Andrew. At that point we did not know what to expect. Everyone returned to the hospital, making the same drive they had just the day before. But this time no one worried about or even mentioned the weather.

Early in my pregnancy I was diagnosed with having a Single Umbilical Artery. That can be a warning sign for other problems such as heart defect, kidney problems, brain or spinal cord abnormalities or chromosomal defects. So throughout my pregnancy I had more ultrasounds to check all of those things and it appeared he was fine. My worry was eased for the most part when he was given a clean bill of health but I was not really going to believe it until he was born. Moments after his birth I asked about his heart and I was told he was fine. So the news of this defect was hard to understand because I thought he was okay.

When the initial shock wore off and we learned how to deal with Andrew and his special little heart we resumed life as normal… or what would now be normal. "Life is not about waiting for the storm to pass, it is about learning to dance in the rain". (Or snow in Andrew's case) This quote is a perfect representation of our new life with Andrew. Taking home a newborn you have a list of things to remember. Added to our list were several new doctors, warning signs for heart failure, warnings about tet-spells, when to call 911, infant CPR, and a long list of doctors' appointments. Andrew was a very lucky heart baby. He got to go home in a normal amount of time from the hospital and did not require immediate surgery like many heart babies do.

Andrew went to visit the cardiologist every 4-6 weeks. He would have tests done on his heart to monitor when he would be ready for surgery. The tests included chest x-rays, checking pulse-oxygen levels, and echocardiograms. It was very hard to see an infant go through all of those tests. Shortly after birth Andrew was put on a prescription of Lasix to keep fluid out of his lungs. It seemed as if we were always going to the doctor and this is how we continued for 5 months. But happily, because Andrew was doing well and just by looking at him you would never know he was sick.

July 10th, 2008 is a day I will never forget. Andrew was 5 months and 6 days old. His father and I handed him over into the capable hands of Dr. Jim Davis at the University of Iowa Children's Hospital. Knowing you are giving your baby to someone who was going to stop his heart is the most terrifying feeling in the world. As a parent you expect the best but prepare for the worst so between the tears and the many, many hugs and kisses you cannot help but think this could be the last time I ever hold my baby.

Those feeling passes as the day went on because we knew Andrew was being fixed! We had all the confidence in the world that his wonderful doctors and nurses would do everything in their power to make him better. The wonderful care given not only to Andrew but to our entire support group was outstanding. It did not take the feeling of fear away but everyone at UIHC made the process bearable.

Seeing Andrew for the first time after surgery was hard and it really made everything real. When he was in surgery we saw nothing, we just heard of the progress. But in the PICU there were wire and tubes and monitors and ventilators and ivs coming out of every limb. As a parent you want to protect your children and shield them from pain… I was helpless. I was afraid to touch him and I so badly wanted to trade places with him. But under all of the tubes and wires was my baby, my beautiful little boy and his wonderful pink cheeks!

Andrew stayed in the hospital for ten days. He had some minor bumps in the road to recovery but all in all, he did a great job. When we returned home it was like bringing home a newborn… only I was a bit more neurotic. Ten days prior his heart was not beating… if I did not check on him ten times a night it might have stopped again. ? He came home on 2 prescriptions that were on a very specific schedule. He also needed RSV vaccinations every 28 days to help prevent any infection in his heart. He really had no restrictions except to keep the germs away. We resumed our schedule of visiting the cardiologist every 4-6 weeks and again adjusted to our "new" normal life.

Three months later Andrew was taken off all his medications. And 6 weeks after that we were given wonderful news that the cardiologist did not need to see him for 6 months! That was a wonderful feeling. Andrew has healed well and is progressing perfectly. Andrew turned one a little over a month ago. What a wonderful time that was to reflect on his life can celebrate how far he has come. The hope is he will not need any more surgeries but we will never know that. For now he is in good health and we know that can change. We also know that he is an incredibly strong child and quite the fighter. Every time he gets sick I worry about his heart and I am not sure that will ever change. But you cannot live your life worried because you will miss out on the good stuff. He truly is our little hero. And again, by looking at him you would never know he was sick. But now he has a battle scar that I think is beautiful.

In order to learn more about CHD's and raise money for research we; the parents, family and friends of Heart Babies, need to spread awareness. There are more than 40 different types of heart defects and 40,000 infants are born with a CHD each year in the Unites States, yet newborns are not screened. Congenital Heart Defects are common and deadly, yet CHD research is grossly under-funded. In the United States, twice as many children die from a CHD each year than from all forms of childhood cancer combined, yet the funding for pediatric cancer research is five times higher than funding for CHD. In the last decade death rates for Congenital Heart Defects have declined by almost 30% due to advances made through research. By raising awareness and increasing funding for research there is hope for answers and hope that all of our Heart Babies can be healed.

Erin Burton (Andrew's Mom)