Dear parent of a child with anomalous left coronary artery (congenital heart defect),
To this day we are all too keenly aware that if it were not for a series of coincidences, our Matthew would not be alive. Throughout our saga, I've learned to always, always trust my own instincts as a parent. If you know that something is wrong with your child, but doctors don’t seem able to determine the problem or solution, do not give up. Keep pushing for your child's well-being. Also, have faith. We believe in miracles because we received one. This is the story of Matthew's miracle.
In November 2004, I gave birth to my second child, a son we named Matthew. The pregnancy, ultrasound, and delivery were all fairly uneventful. During circumcision though, our doctor returned from the procedure asking us to keep an eye on him because he had a "seizure-like" reaction during the procedure. He was whisked away to the Neonatal Intensive Care Unit (NICU) for observation and released the next morning. We were assured that he was fine and maybe the rookie OB/GYN who performed the circumcision had perhaps overreacted a bit.
It turns out that she was the first one to spot a problem. In March, my 2-year-old came down with a cold. His 4-month-old baby brother soon caught the cold, too. But while big brother soon got better, baby Matthew did not really get better. He had a runny nose and seemed stuffy. I would describe his breathing as wheezing. After about a week of his “cold” not improving I scheduled a pediatrician appointment for Matthew. That weekend I dropped my husband off at the airport where he was to go a two week business trip to Kansas. I thought that the baby was just having a tough time shaking the cold and that he would get better soon. I couldn't have been more wrong.
Matthew was no better on Monday when I brought him in to the doctor's office. This was a large group pediatrics practice so I saw my first of many different doctors. The doctor diagnosed him with bronchialitis and brought in a nebulizer for me to borrow. I was advised to bring Matthew back in two days if he didn't improve. Over the course of the next two weeks I brought Matthew back to the doctors' office every two days. The doctors that I saw adjusted dosages and prescribed two different medications. About mid-way through the second week we were sent for a chest x-ray. The radiologist's report stated that Matthew's lungs were clear and that his heart was on the “large end of normal range.” The radiologist did not see the problem. Matthew still did not improve. In fact, his breathing seemed to be getting worse.
During this two week period I nebulized my infant every four hours. This meant, of course, that I never got more than a three hour chunk of sleep. I was also caring for my active, but luckily healthy, 2-year-old. My husband was gone on a business trip so I was doing all of this alone, around the clock, for two solid weeks. I was absolutely exhausted. At this point I was really scared as well. My son was not getting better and I really felt like the pediatricians were not grasping the fact that his condition was deteriorating. I believe that this was due to the fact that I saw six different doctors/nurse practitioners in the six different appointments I had. By Friday, I was at the end of my rope. I was terrified, exhausted, and frustrated. When a doctor started talking again about another nebulizer medication, I lost it. I began to scream. I told them that it was clear that they did not have the faintest idea what was wrong with my child and it was time to refer him to a specialist. The doctor sheepishly agreed that a pediatric pulmonologist would probably be a good idea.
I called my husband from the exam room to have him verify with our insurance carrier participating pediatric pulmonologists. I waited on the cell phone while he looked up and discovered that there was only one DC-area pediatric pulmonologist group that accepted our insurance: Children's National Medical Center. I was sent to the desk of the triage nurse, who set up the appointment for us. She told me that “Children's is a real pain to try to get an appointment with because they keep me on hold forever. Why don't I make you an appointment with the guy that we usually refer people to?” Exasperated I asked if she was planning on paying the bill that he would surely send me since I knew that he didn't accept my insurance. She turned back to her desk and told me that she would call Children's National and then call me later in the day with an appointment time. I didn’t wait. I called her two hours later, but she was still at lunch. She called me about an hour after that with an appointment with Children's Regional Outpatient Center (ROC) of Northern Virginia. This is the moment that our miracle began.
I picked up my husband at the airport that weekend. On Monday, we took Matthew to the Pulmonology Department at the ROC. We brought his chest x-ray. The nurse practitioner brought in the medical grade nebulizer and treated him herself. She then listened to his breathing. Immediately seeing no improvement she asked to look at his chest x-rays. After a couple of minutes she told us that she wanted to show the x-ray to a colleague. About ten minutes later, Gerard Martin, MD, walked into the room and our life changed forever.
Dr. Martin sat quietly and just looked at Matthew for a good two minutes. He then put his stethoscope to Matthew's chest and listened. He then stood and asked us to follow him. My husband and I exchanged glances and carried our baby into a room with a sonogram machine. While I held my tiny son, the technician scanned his chest. After maybe five minutes Dr. Martin said, “Okay, I've seen enough. Let's go back to the room.” Once my husband and I were seated, Dr. Martin began to talk. “You son does not have a cold or a breathing problem per se. He is in heart failure. We are calling the hospital now. He will need surgery in the next 24 hours. We have called an ambulance for you.”
I truly appreciate Dr. Martin's direct approach. After all, is there really a good way to tell a parent that their child’s heart is failing? The next 10 days were a blur of tears, fear, and a whole lot of prayer. I rode in the ambulance with Matthew, while my husband followed behind in our car. Matthew was admitted to the Pediatric Intensive Care Unit (PICU). We had to wait about two hours before we could see him. My husband and I walked back to his bed in the PICU to see our tiny darling baby boy hooked up to tubes and wires. He was screaming and looking at me with that look that mothers know. It is the look that means “Mommy, make it stop.” I am still haunted by the memory of that tiny face and the knowledge that I could not make it stop for my baby. I kissed his face and told him how much we love him. I asked him to not be afraid. I told him that were going to get him all fixed up. I sang him “Twinkle, Twinkle Little Star.” I tried not to cry in front of him. I did not always win that particular battle.
A team of doctors appeared to explain that Matthew had an anomalous left coronary artery. The artery that is supposed to carry blood to the heart was connected to the pulmonary artery instead; a biological wrong turn, which would have been present at birth. He would need a procedure called a reimplantation to move the artery to its correct path. The surgery would be performed by world-renowned pediatric cardiac surgeon, Richard Jonas, MD.
The next morning at 7 am, Matthew had surgery. Matthew remained in the PICU for seven days. After surgery, he struggled with a fever. He was finally well enough to go to “the floor” on day seven. Matthew remained at the hospital for another three days. Throughout the entire 10 days I remained by his side. While he was in the PICU, I was not allowed to hold him or nurse him. I had to pump my milk instead. That first day on the floor, I think I held him for most of the day. I slept in the chair in his room and willed him to get better. On our final day a nurse came in to give me instructions. She went over the schedule for the four different medications that Matthew would need. She gave me bathing and general care instructions, as well as a timetable for follow-up doctors' appointments. She also told me that many parents just assume that the pediatrician would know if something were really wrong. She told me that if I hadn't been so forceful about getting a referral from the pediatrician things might have turned out differently for Matthew. I finally felt comfortable believing in my own instincts as a parent. That nurse empowered me that day.
I now look at my Matthew, who is five years old. He is a wild and rambunctious preschooler. He plays on a baseball team with his older brother. He can't wait to start “big kid school.” He has never suffered any developmental delays. His heart is now deemed normally-functioning, verified with our annual visits to Dr. Martin, now Matthew's cardiologist. The scar on his chest has grown faint, but is still visible. He is curious about it. Our explanation to him is that was born with a broken heart and Dr. Martin and Dr. Jonas fixed it. And I suppose that is the thing. The doctors and staff of Children's National Medical Center mend the broken hearts of not only the children, but the family of those children as well. My son is alive and well today because of the miracle that happened at Children's National Medical Center. My advice to any parent going through this is to trust yourself to make the right decisions, to place your faith in God, and to pin your hope on the care that you will receive at Children's National Medical Center.
Anna and Jason