Charities Helping to Treat Children With Heart Defects by Gina Shaw Deborah was 3 years old but she looked much younger. Her twin brother, almost twice her size, could race around the room, but it took all of Deborahís effort just to walk. The tiny girl, from a small village in Uganda, was born with a congenital heart abnormality called tetralogy of Fallot, a combination of defects that includes a hole between the two bottom chambers of the heart and a narrowing near the pulmonary valve, called pulmonary stenosis. Instead of normal, oxygenated red blood pumping to her body, her heart pumped a mixture of oxygen-rich and oxygen-poor blood, leaving her weak and sickly. If Deborah had been born in the United States, she would have already had surgery to correct this defect, but at home, the Uganda Heart Institute lacked the facilities and specialists to repair the condition. Without surgery, her prognosis wasnít good: Only one in four children with untreated tetralogy of Fallot live to the age of 10. Fortunately for Deborah, she met Dr. Craig Sable, a pediatric cardiologist from Childrenís National Medical Center (CNMC) in Washington, D.C. Since 1999, Sable had been visiting childrenís hospitals in Africa, invited by th e wife of Benin President Mathieu Kerekou, who had paid a visit to CNMC. Through Mrs. Kerekou, Sable developed contacts with several African ambassadors to the United States, including Ugandan Ambassador Edith Grace Ssempala, who introduced him to a pediatric cardiologist at the Uganda Heart Institute at Mulago Hospital in Kampala. ìCoincidentally, at the exact same time I was developing a relationship with the doctor in Kampala, Samaritanís Purse, a North Carolina charity which works to bring children from developing nations for treatment at U.S. childrenís hospital, was developing a relationship with our hospital,î said Sable. CNMC, Samaritanís Purse, and the Uganda Heart Institute entered into a working relationship in late 2002, and in January of 2003, Sable went on his first trip to Kampala. There, he met Deborah and about 50 other children with cardiac defects. ìAbout 20 of those kids had heart conditions that were amenable to the kind of treatment thatís only available in the U.S.,î said Sable. Of those, he chose six children, including Deborah, whose conditions were relatively urgent but could be fixed with one surgery. (There is no guarantee that children can be brought back for multiple surgeries.) ìItís a hard decision. We donít have enough support to bring every child here that needs it.î In July of 2003, Deborah and the other child who was most seriously ill, a 5-year-old boy named Hassan who had an atrial septal defect (a hole between the top two chambers of his heart), flew to Washington accompanied by a translator and one parent for each child. They had their surgeriesóand the change was remarkable. ìWithin a week of the surgery, Deborah was running 10 times faster than sheíd ever run before,î Sable recalled. ìWhen I returned to Uganda in the fall, I went to each of the childrenís homes and visited them, and she was exactly the same size as her twin brother and could outrun him.î And what about Hassan? When Sable returned to his village, the little boy grabbed his doctor by the hand and paraded him around to every home to visit all of his neighbors. ìThere, everybody in the community feels like a sick child is their child. Everybody knew who I was, and the joy with which each one came out to greet me was unbelievable,î Sable said. ìBy helping one child, we can make a difference in more lives than you can possibly imagine.î Most Common Birth Defect Heart defects are the most common birth defect. Approximately 1 percent of all children worldwide are born with a congenital heart problem. ìHeart defects are unique because in many cases a single, one-time fix can make the difference between a short life for a very sickly child and a very healthy child who will live a long and normal life,î Sable said. After Deborah and Hassan, the partnership between CNMC, Samaritanís Purse and the Uganda Heart Institute brought four more children to Washington for surgery in 2003: two in September and two in October. All of the surgeries were successful, with most of the children out of the hospital within three days (Deborah and Hassan stayed longer). On Sableís return trip to Uganda in November, he identified another group of children in need of surgery and is now making plans to bring as many as 10 children to the United States for treatment this year, starting in the spring. ìMy hope is to get every child on the listóabout 25 at this pointóthe care they need,î Sable said. He also plans to help his colleagues at the Uganda Heart Institute expand their program and equipment so that many of these children can ultimately receive care at home. ìThrough Samaritanís Purse, weíve arranged for the donation of medical equipment, books, drugs and other things to support care. The next step is to build a program,î Sable explained. ìI spend a lot of time doing lectures and training their cardiologists, I evaluate the equipment they have, and try to raise funds for additional equipment to help them do these cases on their own. As wonderful as it is that we can treat these kids here, it would be even better if it could be done there.î Project Kids Worldwide Seven-year-old Lirjon, an Albanian boy born in Kosovo in the middle of the ethnic and religious strife of the 1990s, survived the calamitous conditions in that region, a four-month flight from the Serb forces that occupied his village, and a disastrous return that found his familyís home burned to the ground. But he could not survive for much longer with the ventricular septal defectóa hole between the bottom two chambers of his heartóthat he had had since birth. He grew too weak to play outside, and doctors gave him less than a year to live. Hospitals in the region couldnít perform the surgery that would repair the hole in his heart, an operation done every day in U.S. hospitals. Then Jacqueline Gavagan and Dr. Stephen Colvin found out about Lirjon. Colvin is the chief of cardiothoracic surgery at New York University Medical Center. Since 2000, Project Kids Worldwide, an organization he co-founded with colleague Dennis Schwesinger, director of the Cardiac and Vascular Program at NYU, has brought some 100 children from all over the world to New York for heart surgery not available in their native countries. Jacqueline Gavaganís son, Donald, had been one of Colvinís local patients; in March 2001, Colvin repaired the 2-year-oldís atrial septal defect. Six months later, Donaldís father and Jacquelineís husband, Donald Gavagan Jr., a bond trader with Cantor Fitzgerald, died in the Sept. 11 attack on the World Trade Center. ìI wanted to do something in his memory, and I thought long and hard about what would best represent what my husband was all about. I remembered how crushed he was when our son needed open-heart surgery, and I couldnít imagine having a child who needed that surgery and not being able to do anything,î Jacqueline Gavagan said. ìSo I asked Dr. Colvinís office if there was anything I could do in memory of my husband, and they told me about Project Kids Worldwide.î Six months later in April 2002, Lirjon and his parents came to New York for his lifesaving heart surgery, the first beneficiary of the Donald Richard Gavagan Fund. ìHe had to be carried in here by his parents. He had such a severe blockage underneath his aortic valve that he couldnít even move, because the blood wasnít circulating to his body,î Colvin said. The day after surgery, Lirjon was playing in his hospital bed with Jacqueline and Donald Gavaganís children. Two days after surgery, he walked happily out of the hospital. ìEvery September, itís my hope to save a childís life in my husbandís memory. Itís a great way for my children to remember their dad,î said Gavagan, who holds fundraising events annually to raise the $30,000 that she needs to bring a child to NYU for surgery. In September 2002, that child was Chika, a 16-year-old Nigerian girl who had developed severe valvular heart disease after contracting rheumatic fever when she was 7 years old. ìShe was so sick that I canít believe she even made it here,î recalled Gavagan. ìShe was interviewed by a local news crew, and they asked her what she thought of me. She cried so much and talked about how I saved her life, and it was just unbelievable. My husband was so full of life, and itís fitting that his memory continues to save the life of children like Chika.î Thanks to donors like Gavagan and other supporters, Colvin and Schwesinger ultimately hope to care for 100 children every year through Project Kids Worldwideóchildren from every corner of the globe. ìWe see kids from Africa, Asia, Europe, the Caribbean, the Middle East, South America, everywhere. We have no boundaries and no b orders,î Colvin said. As of press time, Colvin was in contact with a group of Israeli cardiologists who had traveled to Iraq and identified a group of children with severe heart defects in immediate need of care. ìThese kids have desperate conditions, and thereís just no infrastructure there to care for them,î said Colvin. ìThe Israeli doctors contacted us for help, and weíre trying to raise funds to bring the children here.î Like Sable, Colvin and Schwesinger also plan to expand Project Kids Worldwide to improve the facilities and training for pediatric heart surgery in other countries. This summer, a surgeon from Fu Wai Hospital in China will come to train at NYUís cutting-edge facility, the first of what the doctors hope will be many overseas physicians coming to train here and help develop programs for their own countries. ìThere are so many children all over the world who have what you and I would call simple cardiac defects and will die as a consequence of them,î Colvin said, ìbut if they had care early on, they would be able to live a long and normal life.î For more information on Dr. Craig Sableís work in Uganda, or to donate, please contact him at (202) 884-8020 or the Childrenís National Medical Center Development Office at (202) 884-4217. For more information on Project Kids Worldwide, or to donate, please call (212) 263-8141 or visit www.projectkidsworldwide.org. Gina Shaw is the medical writer for The Washington Diplomat.