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Mubarak Al-Kaabi : Dilated Cardiomyopathy

International Patient Finds Hope and Healing in Pittsburgh

 

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When Mubarak Al-Kaabi was born in Doha, Qatar, everything seemed normal. But at age 3-1/2, he was diagnosed with dilated cardiomyopathy—an enlargement or thickening of the heart muscle—and his doctor advised his parents, Aisha and Abdullah, to take their son to a heart transplant specialist for an evaluation. Because that type of specialty pediatric care is not available in the Middle East, the Qatari government sponsored Mubarak and his family, sending them to medical centers first in Great Britain and then in Germany, but neither accepted his case right away.

After a long delay, Aisha’s doctor, who had trained in the United States, suggested taking Mubarak to the States for care. The family essentially began the process again from scratch, and the Qatari government then sent his information to the medical attaché at their embassy in Washington, D.C., to find an American hospital that might consider Mubarak’s case. The information was forwarded to the Heart Institute at Children’s Hospital of Pittsburgh of UPMC, where it was reviewed, and Mubarak’s case was accepted.

The family first visited with cardiologists and cardiothoracic (CT) surgeons at the Heart Institute at Children’s Hospital in February 2010. Mubarak was found to be in acute heart failure and his condition was worsening, so he was placed on a ventricular-assist device (VAD) to support both the right and left ventricles of his heart, known as a Bi-VAD, and moved to the cardiac intensive care unit (CICU). Very ill, Mubarak was then listed for a heart transplant.

For the next eight weeks, Mubarak’s parents and older sister, Roudh, lived at the Ronald McDonald House while he was in the CICU. On April 28, a suitable donor heart became available and the next day Mubarak, then age 5, received a heart transplant performed by Children’s CT surgeon Peter Wearden, MD.

Two days later, while Mubarak was still in the hospital, Aisha gave birth to the couple’s third child, a daughter, at Magee-Womens Hospital, and a little more than two weeks later, Mubarak was discharged from the hospital.

The family, wanting some quiet space and privacy so that Mubarak could heal, then moved to an apartment in Greentree, where they lived for the next six months while Mubarak received check-ups regularly every one to three weeks. Eventually, his visits tapered to every three months, and Mubarak was able to return with his family to his home country. Mubarak became not only the first child from the Middle East to receive a heart transplant at Children’s; he also became the first to be able to return to his home country afterward.

Now, every six months, Mubarak must return to Children’s for a heart biopsy and evaluation by Children’s transplant cardiologists to ensure that he does not show any signs of rejecting his new heart. Once he hits five years post-transplant, his visits will be cut back to once a year. But, other than periodic visits to Pittsburgh, Mubarak is pursuing the typical activities of a 7-year-old boy: learning to swim and ride a bike, playing computer games, and attending first grade.

Parallel Journeys

Throughout the Al-Kaabi family’s two-year journey with Children’s, their international physician liaison, Mourad Hanna, has walked right alongside them.

Mourad is responsible for tending to the family’s many needs, including working with the family to facilitate their travel to the United States; making arrangements for their stay in Pittsburgh; serving as their interpreter; providing admission to the hospital; taking care of the paperwork—not only for the hospital and health insurance, but for the family’s U.S. entry permits and visas, as well.

On the medical side of all that planning is Alice Maksin, RN, BSN, a certified transplant coordinator at Children’s, who works in constant collaboration with Children’s physicians, Mubarak’s physicians in Qatar, and Mourad, to schedule testing and treatment.

“We become very close to the families throughout their experience here,” Mourad says. “Some of the patient families speak very little English, and they are dealing with very sick children, far from home and their support networks. We do everything we can to lighten the load.”

International physician liaisons are available to help families from all over the world receive medical care in Children’s understanding, culturally sensitive environment. For more information about the Clinical Concierge Services (CCS) program for international patients and families, please visit http://www.chp.edu/CHP/ccs.

Last Update
October 8, 2012
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Last Update
October 8, 2012
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