x Abu Dhabi, UAE Friday 21 July 2017

Family in fight to save life of UAE toddler in need of transplant

The young Omani-Hungarian toddler has been suffering over the past 18 months from a rare heart condition diagnosed as Dilated Cardiomyopathy and is currently on life support awaiting a heart transplant that is not available in the GCC.

Muneer al Hajri with a picture of his daughter, Meera al Hajri, on his laptop. Delores Johnson / The National
Muneer al Hajri with a picture of his daughter, Meera al Hajri, on his laptop. Delores Johnson / The National

ABU DHABI // Parents of Abu Dhabi-born Meera bint Munir Al Hajri, who is turning two next month, are battling against time to save her life.

The young Omani-Hungarian toddler has a rare heart condition diagnosed as Dilated Cardiomyopathy and is on life support awaiting a heart transplant that is not available in the GCC.

According to Meera's father, Munir Al Hajri, the heart condition was first diagnosed at Sheikh Khalifa Medical Centre (SKMC) in 2011 after she had trouble breathing and feeding.

"We were shocked when the doctors told us her condition," he said. "She was sweating and crying, refusing to feed and, when she did, she was still weak."

Meera was taken to Al Noor Hospital in Abu Dhabi before she was transferred by ambulance to SKMC.

"Her chest was bloated and doctors told us that her heart was enlarged," Mr Al Hajri said.

According to Dr Gerard R Martin, senior vice president of the Centre for Heart, Lung and Kidney Disease and the co-director of Children's National Heart Institute in Washington DC, only one in every 100,000 children are born with this congenital disease.

"It is a disease of the heart muscle and the causes are unknown." Dr Martin said after reviewing her case. "It can be either from a genetic problem or a viral infection and also toxins like cancer treatment or alcohol."

He said that a third of children under a year old who have the condition diagnosed die from its effects while a third are stabilised with medications and a third remain the same.

In the case of Meera, according to her father, she was released from SKMC three weeks after the condition was first diagnosed. But in March, she suffered heart failure again.

"After she was stabilised in Abu Dhabi, we transferred her to the Royal Hospital in Oman," he said.

Mr Al Hajri said that the cost of maintaining her health has been extremely high.

"We were provided access to the best hospital in Oman but, unfortunately, her only chances are with a heart transplant and that is not available in the Arabian Gulf except in Saudi Arabia - and then it is only for adults," he said.

According to Mr Al Hajri, the cost of a heart transplant is in the range of Dh250,000, not including the travel costs and care.

Dr Martin said that a transplant and the necessary six months of care costs about US$700,000 (Dh2.57 million) in the US.

Medical care in Hungary was suggested to the family by the director of paediatric cardiology at SKMC, Mr Al Hajri said.

According to diplomats at the Hungarian embassy in Abu Dhabi, an advanced medical programme is available in Hungary and they are in contact with Meera's family.

"We are trying to speed up the paperwork to register the child in Hungary and help the family to transfer her there," an embassy official said.

Upon transfer, Meera would be placed on an EU heart transplant list, which would gets things moving quicker and enhance her chances of survival.

Mr Al Hajri said that the transfer itself was throwing up further problems. "We are speaking with Qatar Airways and Turkish Airlines to see what the costs are of a medical transfer to Budapest," he said.

According to Dr Martin, some commercial airlines provide medical transfers with doctors and equipment, but only depending on the child's condition.

The cost for a transfer can range from Dh30,000 to Dh50,000.

"We have to arrange the quickest process to transfer her," Mr Al Hajri said. "It's a battle against time."

amustafa@thenational.ae