"I got pregnant in July 2001," recalls Rhia. "My first sonogram didn't show twins. On Halloween, we found out that we were having twins and it was a big shock. Although twins run in my husband's family, we didn't think it would happen to us." As the family adjusted and prepared for baby -- times two -- Rhia's obstetrician began monitoring her a little closer. Rhia had just been diagnosed with type II diabetes, so her pregnancy already was considered high risk. She was referred to Jodi L. Schucker, MD, a board-certified perinatologist. Perinatologists are OB/GYNs who specialize in the management of high-risk pregnancies. In January 2002, around her 25th week of pregnancy, Rhia had a sonogram at Geisinger Wyoming Valley, where she received some distressing news about her babies' health. "First, the sonogram showed Elyse's head was considerably smaller than Evan's, which made the doctors concerned that Elyse might have Down syndrome. The doctors thought Evan was at risk for Down syndrome, too, because the girls were monoamniotic twins -- two babies in one sac with no membrane between them. Second, doctors couldn't see Elyse's heart because of how Evan was positioned," Rhia says. Rhia and her husband were asked to return the next day for a second sonogram. "We had nearly a two-hour drive from our house to Geisinger; my husband and I opted to stay at Ronald McDonald House. Because our son, then 11, was in school, we had to make arrangements with other family members to take care of him while I was in Danville for testing," Rhia says. The second sonogram revealed a large hole in Elyse's tiny heart. "Mike and I were devastated," Rhia remembers. Rhia was also scheduled for amniocentesis to test for the presence of Down syndrome. Fortunately, amniocentesis showed that neither twin was afflicted. Even with that hurdle cleared, the family nervously awaited the birth of their twins. They arrived on February 15, 2002. "Their umbilical cords were enormous and intertwined, and each girl was very tiny," Rhia remembers. Evan weighed 4 pounds, 6 ounces; Elyse entered the world weighing 3 pounds, 11 ounces. Within minutes, both infants were admitted to the Neonatal Intensive Care Unit (NICU) at Janet Weis Children's Hospital. Evan, who was born slightly anemic, was discharged after 11 days, but a more treacherous path awaited Elyse, who was critically ill. She would remain hospitalized for almost four months. "Elyse was born with transposition of the great arteries, a condition in which her aorta and pulmonary arteries, the two major arteries carrying blood away from the heart, are switched around. Blood going to the body recirculates without going back to the lungs, and blood going to the lungs recirculates in the lungs -- the opposite of what is supposed to happen," explains Robert Mangano, MD, a pediatric cardiologist at Janet Weis Children's Hospital. In addition, Elyse's heart had a ventricular septal defect (VSD), a hole between the upper right and left pumping chambers. Although this hole allowed some of Elyse's blood to mix, the heart still was incapable of pumping correctly and keeping Elyse alive. To survive, she needed surgery to restore blood flow and switch the aorta and pulmonary artery. Doctors could not operate, however, until the infant gained weight and strength -- and surmounted some other serious complications. "Elyse had breathing problems and was on a ventilator most of the time. She was too small and weak to eat on her own, so a feeding tube was put in her stomach. She needed medication to control congestive heart failure and pulmonary edema caused by extra blood in her lungs," Dr. Mangano says. Despite the doctors' best efforts, Elyse struggled to survive. Surgery was performed to control her congestive heart failure. The operation helped but Elyse also needed another procedure, a cardiac catheterization, to create a hole between the two upper chambers of her heart to improve the mixing of oxygen-rich and oxygen-poor blood. Problems continued to threaten Elyse's recovery. She got the flu. Her kidneys were not functioning properly, and she became dependent on sedatives and pain medications. She developed necrotizing enterocolitis, a serious abdominal infection, which was cured with intravenous antibiotics. In May 2002, Elyse was finally strong enough to undergo the life-saving open-heart surgery to switch her aorta and pulmonary artery and close the hole between her heart's pumping chambers. She weighed all of 4 pounds. After the five-hour procedure, she spent several days recovering in the Kiwanis Heart Room at Janet Weis Children's Hospital. She eventually was transferred back to the NICU and discharged on June 10, 2002. Despite the odds, Elyse has made an amazing recovery. She is a vivacious three-year-old who adores her twin sister, loves Strawberry Shortcake, and enjoys watching her 14-year-old brother, Preston, play video games. During a checkup in August 2004, Dr. Mangano observed that Elyse's aortic valve is leaking -- a minor complication he continues to monitor. "Nonetheless, I am impressed with her recovery. She was critically ill, and there were times we thought she wouldn't make it. But she did -- and she's doing very well," Dr. Mangano says. |