A picture of a little girl hugging an elephant hangs in our daughter Kyra’s room. Hung prior to her birth and the diagnosis of her congenital heart defect (CHD), it symbolizes her self-healing. Each day, Kyra befriends her metaphoric elephant by slowly growing tissue over the holes in her heart.
The discovery of Kyra’s CHD surprised us, since all previous tests indicated that she was a healthy baby. Her pediatrician heard her heart murmur at their first appointment. She immediately scheduled a blood draw, an EKG (electrocardiogram), an echocardiogram, and a cardiologist appointment. At four days old, drawing Kyra’s blood proved difficult.
In the hospital laboratory, Kyra screamed for my help, as useless needles hung from her arms. Three phlebotomists later, I told them to stop looking for a vein. So they cut her foot and squeezed it out drop by drop. After trying to comfort Kyra for what seemed like an eternity, I insisted that whatever blood they had collected would have to be enough. Thankfully, it was. She had two more tests to complete.
The next morning, Kyra’s cardiologist diagnosed her with an ASD (atrial septal defect) and a 7-millimeter VSD (ventricular septal defect). Fortunately, all of the pieces of her heart were present and functioning. She was given a 50% chance of avoiding open-heart surgery; if she could grow enough tissue on her own to close her VSD. Surgery would be postponed for as long as possible. In the meantime, Kyra’s weight would be under close observation. Any sign of weight loss could lead to a height loss, followed by a loss of brain cells. She would have to be weighed weekly on the same scale, in the same manner (wearing nothing but a clean diaper).
One Friday afternoon, the scale showed Kyra’s first weight loss since birth, one month prior. Given her feeding challenges, we were advised to spend the weekend learning to install a feeding tube. That night, I paged Kyra’s cardiologist and told him that I’d rather stay up feeding her twenty-four hours per day. I was sure that a feeding tube would break Kyra’s spirit. An extensive conversation ensued about her reflux and current feeding routine. He made suggestions, like feeding her less milk more frequently, and holding her upright for fifteen minutes afterwards. Then, he gave her the weekend to regain some weight. On Monday morning, the scale showed almost a one-pound gain.
After that, Kyra continued to slowly gain weight, although feeding remained difficult. She had up to fourteen feedings per day, eleven on average. Alternating breast milk with several types of formula also seemed to help. So, I began a daily feeding log of what she consumed, when, and the results. Six months later, we began working with a nutritionist and a speech therapist, for feeding issues, through Early Intervention (a state-run program, available for an income-based fee, for children under threeyears- old). I kept their services and her feeding log for an entire year, until her weight was no longer under close scrutiny.
I also lobbied to get Kyra off her medications. At one-month old, she was on Zantac, Lasix and Digoxin, with three additional medications being prescribed. Since Kyra vomited, got diarrhea and/or ate less with every dose, I argued that the medications we were using were defeating the purpose of weight gain. Fortunately, Kyra’s cardiologist agreed to take her off one medication at a time, as long as she did not suffer any setbacks. She has been prescription-free ever since.
Kyra’s progression made it easier to endure our loneliness that winter. Virtual isolation and Synagis shots were recommended, to keep Kyra from contracting RSV (respiratory syncytial virus). Being confined to our home, my twenty-month-old son, Erik, and I gave up our friends. My husband’s grueling work schedule included one weekend per month and traveling. As a result, Kyra and Erik frequently had only one parent to care for them. The promise of spring and a double stroller kept us going.
This October, as we celebrate Kyra’s second birthday, we are grateful to Dr. Guy Randolph, Dr. Thomas Weigel and Dr. Janice Salem for their foresight, open-mindedness and wisdom. We also realize how fortunate Kyra is to have her set of circumstances. Many other CHD children face far more critical challenges. We can only imagine how big their elephants must be, and how difficult they are to befriend.
Article written by M.T.Johnsson, Kyra’s and Erik’s full-time mom,
and freelance writer