Josiah blossoms day by day
When Josie was 33 weeks pregnant with her son, Josiah, she received disturbing news: a routine ultrasound indicated that her baby had a problem with his aorta that, if left untreated, could damage his heart. Upon birth Josiah was rushed to Children’s Memorial Hospital, where he spent the first 17 of his 19 months of life being treated for congenital heart defects by the hospital’s expert staff of cardiologists and cardiovascular-thoracic surgeons.
At the hospital, further tests indicated Josiah had an even more serious heart problem, a condition in which the mitral valve causes blood to leak backward into the upper chamber of the heart. If left untreated the condition can lead a number of complications, including heart failure. Unfortunately, there are no mechanical mitral valves small enough for newborns. Shortly after he arrived at Children’s Memorial, Josiah underwent an urgent surgery to correct the aortic abnormality and to repair the mitral valve. In an 8-hour procedure, a surgical team including Carl Backer, MD, head of the Division of Cardiovascular-Thoracic Surgery, and Sunjay Kaushal, MD, performed a temporary repair of the fragile, leaking valve. After surgery, Josie was shocked when she saw tiny Josiah. “When I saw him hooked up to all the machines I said to my girlfriend, ‘I need to go home and lay down!’” she says. “I came home and prayed, because I knew my baby needed me to be strong for him.”
After a second partial repair of the valve, Josie was told her baby’s best long-term chance for survival was either a heart transplant or to wait until he grew large enough for a mechanical valve. Josiah was placed on the list for a donor heart. While still waiting for a donor heart, at five months of age Josiah had grown sufficiently for surgeons to replace his mitral valve with a mechanical one. The procedure was very challenging, according to Dr. Backer, but was a success, and Josiah was removed from the transplant list.
During her son’s first six months at Children’s Memorial, Josie spent virtually every day and night at the hospital. As if having a critically ill child wasn’t stressful enough, Josie, a single mother, lost her job shortly after returning from maternity leave. She says she appreciated receiving vouchers for meals at the hospital cafeteria, as well as well as the services of social workers and chaplains.
“My social worker, Sandy Rubovits, would just sit with me and let me talk when I needed to,” says Josie. “She would do anything she could to make things easier for me in the hospital. In fact, everyone at Children’s has been wonderful.”
Josiah also had heart rhythm problems from birth, and needed to take multiple medications to maintain a normal rhythm. Josiah’s time in the hospital was prolonged after the medications stopped working. The condition was corrected by his cardiologist, Sabrina Tsao, MD, the hospital’s Director of Electrophysiology, in a catheter ablation procedure, in which direct radiofrequency energy is directed to the source of the abnormal rhythm to treat it. A few weeks later, little Josiah finally came home. Now, 19 months later, Josiah is thriving and is on the cusp of walking and talking. He is undergoing occupational, physical and speech therapy to help him catch up developmentally after being hospitalized for so long.
“We were at the hospital the other day for lab work and several of his nurses saw him and cried out, ‘Josiah!’” says Josie. “It was like he was a celebrity. Also, Dr. Tsao is so wonderful. She is so proud of him and of how well he’s doing.”
Josie knows that Josiah will need additional mitral valve replacements as he grows, and that a heart transplant is still a possibility. But for now she’s enjoying watching him blossom day by day.
“He’s a very happy and busy little boy,” she says. “He is truly a joy.”
Story originally appeared in the October 2009 issue of Heroes Update.