Philadelphia Inquirer - Children's Hospital of Philadelphia - 3

Sunday, September 30, 2007 THE PHILADELPHIA INQUIRER www.philly.com low tone of Nadia’s skin and eyes a thousand times. The Doylestown couple were repeatedly reassured the baby was fine. But by 5 months of age, Nadia’s stomach had become so engorged that her skin looked almost translucent and her belly button protruded half an inch. Her arms and legs were thin and wasted. Nadia’s doctor sent her for an ultrasound at Doylestown Hospital. Joe took Nadia for the test on April 24, 2006. It was a Monday, his day off from his job as a team supervisor at Annie Sez in Doylestown. It was there, at the women’s clothing store, where nine years earlier Joe, now 41, met and fell for Allison, now 31. She worked there part time, for the discount. Joe, who emigrated to the States from Tunisia, knew right away that she was the woman he wanted to marry. Allison’s passion grew more slowly. They became close, the friendship lasting more than two years before she agreed to a real date with Joe. They were married on Joe’s birthday, Sept. 1, 2002. Both hoped for a big family. Three years later Nadia was born. That Monday, Joe took Nadia to the hospital for her ultrasound while Allison ran to the airport to pick up her parents, who were returning home after a trip to Italy. The ultrasound revealed a problem. Nadia needed to be checked out by experts at CHOP. The sooner, the better. Joe wasn’t worried. He figured Nadia would get some medicine and they would all be home later that day. He was more concerned about finding the children’s hospital in the city. Joe hadn’t fully understood all the medical terms the doctor had thrown at him — English was his fourth language after his native Arabic, then French and Spanish. Nor did he fully grasp the implications of being sent to Children’s Hospital of Philadelphia. So he didn’t call Allison. But when she arrived at the airport, she gave him a call. He hesitated, then told her that he was taking Nadia to CHOP. Joe quickly handed the phone to Nadia’s doctor, who was giving him directions to the hospital. Allison was scared. She had grown up in Doylestown; she knew something must be seriously wrong for the Abraham Shaked, direct of the Penn Transplant Institute, and Elizabeth Rand, a CHOP liver specialist, look in on Nadia. Doctors had two options with the toddler: a waiting list for a new liver, or a procedure that might buy her time to grow. doctor to send Nadia to CHOP. She couldn’t process anything after hearing “fluid in her abdomen.” It was 4 p.m. As Joe headed for the hospital, Allison paced outside the security cordon in the international terminal, fighting back fear. And guilt. How sick was her baby? How could a mother miss an illness serious enough to send her child to CHOP? Nadia was so easy. She never cried a lot or gave Allison reason to think she was in pain. But her baby didn’t like sitting up, and complained when put in the car seat. Like all new parents, Allison and Joe were learning on the job. She felt like they had failed a basic test. Tears rolled down her face as she waited for her parents. Allison was not very religious, but she believed in God. She prayed. A half-hour later, with her parents in tow, she arrived at the hospital before her husband. He got there at 5:10 p.m. The entire family was immediately caught in the bustle and swirl of the emergency room on a busy Monday night. infectious diseases and brain tumors. Even so, Nadia was unusual, a jaundiced 5-month-old with apparent liver disease. She seemed too old for the problem her symptoms suggested. In a tiny triage area behind the waiting room, a nurse assessed Nadia’s condition as “acute,” the second-highest level, due largely to her breathing difficulties. Nadia was quickly moved to a treatment room and assessed again, first by a resident and then by two physicians. They drew blood and took an X-ray. When a nurse inserted an IV, Joe realized it was going to take more than a couple of pills to set his baby right. Allison and Joe did their best to answer the questions flying at them while tracking what was done to Nadia. When did you first notice the yellow in her eyes? How long has her stomach bulged like that? Was her breathing always this labored? Nadia had been yellow for months. Allison wondered: Should they have caught this sooner? Could they have prevented her baby’s illness? The doctors reviewed the ultrasound. Nadia had an enlarged spleen and liver, high pressure in her liver’s portal veins, and fluid buildup in her abdomen. The X-ray came back. It showed the low volume of Nadia’s otherwise clear A deadly discovery Nadia was one of nearly 76,000 children to pass through CHOP’s ER in 2006. The doctors and nurses treat everything from sprains and sniffles to gunshot wounds, failing hearts,

Philadelphia Inquirer - Children's Hospital of Philadelphia

Table of Contents for the Digital Edition of Philadelphia Inquirer - Children's Hospital of Philadelphia