`It's as if this is what she was here for,' mom says

For want of a heart, this girl died

ANDREW STAWICKI/TORONTO STAR by Leslie Papp Toronto Star Medical Reporter November 12, 1998

TENDER MOMENT: Denise Evans, with daughter April last week, is now grieving her death. She asked that this picture be published and hopes it will inspire others to sign organ donation cards.

April Evans was a tiny angel, one who didn't have much time on Earth before being called away.

``Now she's in heaven,'' said her mother, Denise Evans of Caledon.

April was 1 1/2 years old when her heart stopped beating Monday night. She spent the previous six months on a transplant waiting list. But the new heart her body desperately needed never came.

Denise and her husband, Larry, were in the middle of an organ donor awareness campaign they had organized in their area. That will go ahead, they vow, despite their grief over April's death.

``This is for all the other children who are waiting for organs,'' Denise said. Improved donor awareness ``would give April's life more meaning. It's as if this is what she was here for.''

Canada's smallest patients in need of a heart face a daunting statistic - about one in four will die without getting a life-saving organ, say experts at Toronto's Hospital for Sick Children.

``A lot of kids pass away,'' said Dr. David Nykanen, a cardiologist at the hospital. Finding a donor heart that's the right size for a baby, and of the right blood type, presents a major challenge.

``April has not been in competition with anybody for the last six months. She would be considered at the top of the (transplant waiting) list,'' he said. ``But donor availability is a big problem.''

One factor in the shortage is reluctance by some doctors to ask grieving parents to donate the organs of their brain-dead child.

``People are uncomfortable asking, but it's sad when people aren't approached,'' Nykanen said. ``In my experience, many parents see this as an opportunity to salvage some good out of a terrible thing befalling their family.''

Increased understanding on the part of doctors and parents can make a big difference, Denise said. ``I believe April could have lived had people been more aware of organ donations.''

Hoping to help others, the family has donated April's eyes and heart valves for transplantation. Her other tissue just wasn't usable, given the stresses of her illness and the medications she was taking, Denise said. ``We wouldn't have hesitated to donate anything.''

April had a rare disease that made her heart muscle too stiff to properly pump. It made blood back up into the arteries of her lung, leading to breathing problems.

Bright-eyed and alert, the chubby youngster appeared healthy but was never able to walk more than a few steps. And it was sometimes difficult for her even to crawl, her mother said.

Death came unexpectedly. ``It was a shock,'' she said. Doctors had said April might live for several more months.

Her condition deteriorated Monday night and she was rushed to the Hospital for Sick Children in an ambulance accompanied by her father.

Nykanen said April's heart stopped just minutes before she arrived at the hospital door.

April's funeral is to take place today. Her parents are going ahead with a public meeting on organ donor awareness scheduled for Tuesday at 7:30 p.m. at Robert F. Hall Secondary School in Caledon East.

A national report by the Canadian Institute for Health Information concluded last summer that organ donations have failed to keep up with demand, not just for children, but for everyone.

The number of patients on waiting lists for organs has jumped by 68 per cent since 1991, to more than 3,000 at the end of last year.

Of those patients, 82 per cent were waiting for a kidney, 8 per cent were seeking a liver and about 4 per cent needed a new heart.

The remainder represented people waiting for lungs, a kidney or a pancreas. Almost half that total lived in Ontario.

Ontario's Multiple Organ Retrieval and Exchange program (MORE) urges people wishing to donate their tissue after death to fill out an organ donor card.

But they should also tell their family about that decision because next-of-kin have the final word on whether a donation goes ahead.

As many as 25 types of tissue and organs can be transplanted, and one person's decision to donate can benefit as many as 10 recipients.

For additional information on organ donation the public can call MORE at 1-800-263-2833.