Janet and Matthew Legemaate of Hillcrest. Picture: Marilyn Bernard/Independent on Saturday
Durban – The heartbreaking story of a baby without a brain becoming an organ donor has touched a Durban family, who have endured 19 long years of hoping and waiting for that call about new life.

Matthew Legemaate, 19, from Hillcrest, north-west of Durban, spoke out after the Facebook posts this week of US couple, Royce and Keri Young, who made the courageous decision to donate their unborn child’s organs once she was born.

In his post, Young said of his wife: “Literally 30 seconds after our doctor told us our baby doesn’t have a brain, somehow through full body ugly crying, Keri looked up and asked, ‘If I carry her to full term, can we donate her organs?’”

Their baby, who they have named Eva, is due in May. The couple have decided she will be carried to full term so their baby daughter’s predicted 24 hours of life may save another 50.

Read: Mom to carry terminally-ill baby to term to donate organs

Matthew, who needs a heart and bi-lateral lung transplant, and had his first operation when he was 36 hours old, immediately shared the Youngs’ story on his social media platforms this week.

“Organ donation is the most remarkable thing for a family to do, especially as it happens at the time of greatest loss for them. For the recipient it is truly a gift of second chance, the chance to do things you’ve always dreamed of doing.”

The matric pupil was put on a waiting list six years ago and he still hoped to have the transplants. He is also an organ donor.

“I would like to be remembered for the life I have lived, as well as the lives I might give one day,” he said on Friday.

His mother, Janet, said her son was starting to struggle and was very fatigued, often sleeping 14 to 16 hours a day.

“Matthew can only go to school for a couple of hours a day now, but we have told him that’s okay,” she said.

Despite Matthew’s poor health, the family remains hopeful that a donor will be found.

“To see Matthew live a relatively normal life is our dream. The day-to-day stresses are always there, but we have no other option than to look to the future positively, as he does this daily,” said Janet.

Organ Donor Foundation South Africa spokesperson Gillian Walker said there was a long list of people waiting for organs, but the rate of transplants in the country was extremely low, with fewer than 600 solid organ and cornea transplants done a year.

“Currently, there are approximately 4 300 people awaiting solid organ and cornea transplant in South Africa. This statistic is a little misleading as it refers to the number of people on the waiting list and does not include the thousands of people requiring organ transplants who cannot gain access to the medical treatment to sustain their lives while they wait for a transplant,” said Walker.

Deciding to donate a loved one’s organs is difficult at any time and it is “extremely rare” to find parents willing to donate their baby’s organs, according to paediatric hepatologist, Dr Celeste Kok.

“It’s a very special story about the mom donating her baby’s organs when she is born. It is a very sensitive issue and a huge emotional decision.

“There are not enough people out there who are aware about organ donation, it needs to be put out there

“We have long lists of babies who need transplants and most transplants do not come from another baby, but from older people,” said Kok.