Saving Grace ... The Story of a Fighter
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Saving Grace ... The Story of a Fighter
On November 16th, 2006, Claude and Helen Fowlkes Moore, of Mobile, AL, received news that would change their lives forever. During a routine fetal ultrasound, the parents learned that their daughter, Grace Aurelia, had a congenital heart defect. Over the months before Grace’s birth, Helen, Claude, and teams of physicians in Mobile and Atlanta, GA prepared for the surgeries and specialized care Grace would need after she was born.
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After Grace’s birth on February 13, 2007, the future looked bright. Grace was faring better than the specialists had anticipated. So much so, in fact, that she kept getting bumped from the surgery schedule for more critical cases. By February 18, Childrens' Healthcare of Atlanta (Egleston), at Emory University, was ready for Grace. However, the next day, during an exploratory heart catheterization prior to the surgery, a devastating complication was discovered. The heart cath indicated that Grace’s heart had only one coronary artery instead of the normal two. Doctors told Claude and Helen that this condition, coronary sinusoids, increased Grace’s chances of cardiac arrest, and that Grace would very likely need a heart transplant, sooner rather than later. |
The decision was made to proceed with the first repair surgery the next day, February 20. The surgery went well but doctors cautioned that the risk of arrest was still high. Later that night, Grace did, in fact, go into cardiac arrest. She was placed on ECMO (Extra-Corporeal Membrane Oxygenation), an external heart bypass machine that would keep her alive until her heart could function, or until a transplant was available.
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On March 2nd, Grace was still awaiting a new heart. The bypass machine was keeping Grace alive, but her doctors warned that in order to have a good outcome with a new heart, Grace needed to be weaned off the bypass, something she had been struggling to do over the previous several days. But this time, they took her off the machine and she remained stable. When Grace’s doctor spoke with Helen and Claude on the morning of March 3rd, he reported that Grace was hanging on by her fingernails, and that she was still a very sick little girl. His message was clear: in order to live, Grace needed the miracle of a new heart. |
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On March 4th, that miracle occurred. Helen and Claude received a message from Grace’s transplant team that a heart was available. Grace received the new heart and spent several more long weeks in the hospital, facing hurdles such as fluid in her lungs and weaning off of mechanical ventilation. Finally, on April 30th Grace was discharged home to Mobile with her parents.
Throughout this difficult time, Helen and Claude had to relocate from Mobile to Atlanta, where children’s heart specialists that had the resources and training to care for Grace were located. Claude and Helen stayed in hotels and hospital-affiliated rooming houses while Grace spent many weeks in intensive care units. The cost of the transplant alone totaled $987,000 and the Moores incurred many other costs related to hospital stay, time away from work, and lodging. From this point on, Grace’s primary doctors will be in Atlanta, GA, where she will have monthly appointments for the foreseeable future. Grace’s medical care will continue to be costly even at home. Grace needs 10 medications per day. Even more staggering is the fact that Grace will continue to take many of these medications for her entire life. All told, Helen and Claude's estimated out-of-pocket, transplant-related expenses will likely average over $1,500 per month!
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The Children’s Organ Transplant Association (COTA) is a national charity dedicated to organizing and guiding communities in raising funds for transplant-needy patients. So far, volunteers in Mobile have raised funds in excess of $80,000 for transplant patients like Grace. The initial goal was $75,000, but now the campaign has entered Phase 2 and their goal is to raise another $75,000. If you want to know how you can help, contact Vernon Fowlkes, Community Coordinator at 251-343.2717 or email him at Vernon@vernonfowlkes.net. 100% of all funds raised for COTA in honor of patients go directly to transplant patients like Grace. |
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There are several ways to donate:
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