That is exactly why you are getting this shirt. Every time you lose faith, you will grab this shirt, look at it, and convince yourself he will wear it.
Our son Arturo was born at night, welcomed by two very excited parents and one very happy, four-year old big sister. We thought he was perfectly healthy, but the morning after Arturo was born our pediatrician heard a murmur in his heart. A pediatric cardiologist found what was really wrong: Arturo had Pulmonary Atresia with an underdeveloped right ventricle. An ambulance was preparing to transport him to another hospital with a NICU that could perform a diagnostic catheterism that same afternoon.
Even coming from the medical field, surrounded by a loving family and a group of friends, we felt lost. My knowledge of CHD came from books, not personal experience. We could not understand what we had done wrong. We couldn’t imagine how to explain to our little girl, so eager to meet her brother, that he had a serious heart problem.
Arturo underwent his Glen shunt surgery on the second day of his life in Mexico, and the 2 stages of the Fontan procedure in Delaware at 6 months and again at 15 months. When Arturo was two and a half years old, my husband was offered a job relocation to Atlanta. We said, “Yes immediately!” In Delaware, we learned about a great and caring group called Sibley. Our Delaware physicians said that if we ever needed something, we should get in touch with their former colleague who’d joined Sibley, Dr. Kevin Maher.
In Atlanta, we started our relationship with a Sibley cardiologist and felt cared for immediately. For us, it was a group of people, not doing a “job”, but taking care of children and their parents, with joy, knowledge and compassion.
This journey has had scary and stressful moments, but others full of love and great memories. Some memories start as the first one, and end up being the latter. I remember, while shopping for “post-surgery friendly” clothes for Arturo’s first open heart surgery at 6 months, I saw a shirt that I loved. The smallest size was 1 to 2 years. As I looked at it, I started crying. I didn’t dare buy it, because I did not know if my son would live to wear it. But my amazing mother was with me. She hugged me and said, “That is exactly why you are getting this shirt. Every time you lose faith, you will grab this shirt, look at it, and convince yourself he will wear it.”
And you know what? He not only wore it, he looked SO CUTE in it – a red shirt to match his chunky red cheeks – he outgrew it and continues growing like English ivy 14 years later.
It can get better. The medical care will never stop, but it can get better. Arturo came with an endless battery included. He has an amazing sense of humor, enjoys a good conversation, and reads whatever he finds. So far, he’s planning on being a librarian or becoming a famous You-Tuber. He’s a normal, 14 year old middle schooler. He enjoys life like any other teenager does (or is grumpy like any other teenager, depending on the day.) He goes to see Dr. Border once a year for testing. He’s in charge of taking, refilling and making sure we pick up his medication. He looks forward to Camp Braveheart over summer break every year.
From Mexico to Atlanta, we found strength in a network of parents who helped us find ways to survive the emotional ride of CHD. With Sibley and Kids at Heart, our network grew. We found other parents who understood exactly what we felt and were ready to comfort us. We met parents that were just starting this hard but loving journey, who we could help, or at least share our experiences with, so they didn’t have to feel alone. If you’re just starting out on this journey, don’t be shy. This isn’t the moment for that. Approach other parents. We are here to listen, to try to help or just to hug you. If loved ones offer you their help, accepting it is not a bad thing. You will need your strength to support your child, so allow others to help you along the way.