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Long wait takes sporty girl’s life

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iol lif jan 15 organ donar

AFP

A student from Chitrakala Parishat college of fine arts draw graffiti on the walls of a cemetery in Bangalore as part of 26th National Eye Donation Fortnight. While there is a list of children waiting for organs, when an organ becomes available, it goes to the most suitable match.

Durban - A 14th birthday is a fun time for most teenagers and their families, but the Nicholson and Du Toit families will not be celebrating. Their daughter, Aimee, would have turned 14 this coming Sunday, but she died while waiting for a heart transplant. Had a suitable heart donor been found, the fun-loving teenager might still be alive.

Aimee was one of many children who are waiting for the gift of life – a life-saving organ or organs, as well as corneas and tissue.

Samantha Volschenk, executive director of the Organ Donor Foundation, says there is an urgent need for organs for children and consenting to the removal of organs in a dead child is, understandably, a difficult decision for parents. When a child dies, sometimes parents are approached to consider organ donation and signed consent is always needed should they agree.

“In the case of a heart, because of the size, it needs to be a child’s heart or that of a small adult,” she says. “A heart match is determined by size, body weight, blood group, tissue type and other factors. In the case of kidneys, liver, pancreas and some other organs, adult organs can sometimes be used.”

While there is a list of children waiting for organs, when an organ becomes available, it goes to the most suitable match.

In her last days, as she waited for a heart, Aimee could see the bigger picture. She stated that if she were to die, she wanted her ailing heart to be used for research and any usable part of her body to be donated. But her gift of organs was not to be.

Gift of sight

“After she died, because she had gone into organ failure, her organs were not suitable for use,” said her tearful mother Hayley du Toit.

“They did not remove her heart, but her corneas gave the gift of sight to two people.”

So, how was it that the heart of a child failed at the age of 13?

Aimee was born in Durban and as a baby had several soft, yellowish lumps removed from her ankles.

They appeared to be no cause for alarm at the time, but they turned out to be significant as they indicated the potentially life-threatening condition familial hypercholesterolaemia (high cholesterol that runs in the family). The lumps returned at the age of three and were identified as symptomatic of a cholesterol problem – Aimee’s cholesterol was between 12 and 15 (a normal adult reading is between 3 and 5). Treatment to normalise cholesterol levels was started.

Aimee and her sister, Tayla, moved to Dubai with their father, Eric, and step-mother, Juanita, in 2007.

“She was very active, loved sport and outdoor activities and was popular at her new school, Emirates International School Meadows,” says Juanita.

Aimee took part in everything and gave it her all. She was in the school football team, played electric guitar, keyboard, drums and chess and she learnt Arabic when she went to Dubai.

Minimal activity

But failing health and seizures indicated a problem – there were two regurgitating heart valves and a narrowing in the aorta, possibly caused by a bout of rheumatic fever when she was three. She saw several specialists who displayed concern, some recommending she keep activity to a minimum – something a bubbly Aimee found difficult. She compromised by playing goalie for her team and being the score keeper.

In January last year, Aimee went down with jaundice. Tests revealed her liver was failing and recurring rheumatic fever was diagnosed. This was followed by multiple organ failure.

She was admitted to hospital with heart failure – her heart was functioning at 30 percent and she needed valve replacement urgently. It was decided that Johannesburg would be the best place for her.

Her grandmother, Daphne Nicholson, who lives in Queensburgh, takes up the story.

“Aimee was so sick but she was determined to see her baby brother,” she says.

“Ayden was born to Juanita and Eric and the following week, she was evacuated to Johannesburg to get specialist care there.”

She spent a week in the cardiac ICU before an angiogram could be done to determine exactly how her heart was doing. She went into cardiac arrest twice during the procedure, her coronary arteries were blocked (the right completely and the left 80 percent) so a stent was put in. She was discharged about two weeks later to recuperate and to give her heart a chance to recover before the valve surgery.

Her heart was too badly damaged by then, the muscle was too weak and the heart could neither recover nor cope. Her heart function was about 19 percent. She went into full failure a few times and she was in and out of hospital repeatedly.

Doctors decided the best option and chance of survival would be a heart (and liver originally) transplant. Aimee was referred to Milpark Hospital and was put on the heart transplant list awaiting a donor.

Bye on Facebook

“We were very positive that she would get a donor heart soon, since she was told she was the only person in her weight category and chest size awaiting a heart transplant,” says Juanita. “Her blood type (AB positive) also meant that she could accept a donor heart from any blood group.”

Aimee was admitted to hospital with pneumonia for a few days in October, discharged and placed on oxygen 14 hours a day at home. Then, after experiencing pain in the abdomen she had to have her appendix removed. She was stable but things took a dramatic turn when she went into cardiac arrest and was resuscitated repeatedly.

“Her body was just too weak to keep on fighting and she passed away on November 1,” says Hayley. “I suspect she knew she would not make it and said goodbye to her friends on Facebook.”

The family says there is a void that can never be filled and they cherish her memories. - Daily News

l One donor can save the lives of seven people and help 50 with skin, bone, corneas, heart valves and more. For information on organ donation, see www.odf.org.za or call toll-free 080 022 6611.

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