I cannot remember a time when my brother was well. That is, not until he received my kidney 30 years ago. I was born in 1964, and Christopher was born in 1967. We have no other siblings.
When Chris was 8 months old, and I was just turning three, he contracted a potentially fatal condition called hemolytic uremic syndrome (HUS). HUS is a blood disorder characterised by low red blood cells, acute kidney failure, and low platelets. The prognosis of HUS is almost always long-term kidney problems, which is precisely what happened to Christopher.
My mom told me that it started with a fever and extreme diarrhea, and he was very weak. Apparently, my grandmother was visiting and commented that she was going home as “the baby’s nappy is seriously smelly”. By that evening, our parents were at the hospital with their little boy, who by that stage, was seriously ill. They were told he would probably not make it through the night. That was the beginning of a nightmare for my parents which lasted about 22 years.
One of my earliest memories sees me standing with a nurse, looking through a glass window at my mom and dad holding my baby brother, who had pipes coming out of every orifice and even his little head.
Other memories include numerous visits with my parents and grandparents to the old Johannesburg Children’s Hospital in Hillbrow. I was never allowed into the ward to see Christopher, as he was too sick. I don’t remember his homecoming, but I do remember what a strain it was on my mom to have such a sad little baby.
He was on so much strong medication that he usually just sat in his high chair and cried. My mother would often sob with him.
As we grew up, we had a relatively normal childhood, playing together, fighting like normal siblings do, going to the same schools. But every Monday would find us back at the Johannesburg Children’s Hospital, where he underwent blood tests and received new medications when necessary. My parents became such good friends with the specialist that he even came to Christopher’s 21st birthday party.
At some stage, the hospital visits became less frequent and we only had to visit Johannesburg General Hospital (now the Charlotte Maxeke Hospital) monthly. But the cloud of worry still hung over my parents’ heads.
Throughout his life, the doctors would solemnly explain that he was unlikely to make it to two years of age, and then, that he would not see his fifth birthday, and so on. When he was in his teens, they told him he would, at some stage, need a kidney transplant. They also explained that the potential recipient list was long and the donor list was short, so we, his immediate family, should all consider becoming related living donors (RLDs).
Just after my husband, Rodney, and I got married, I mentioned to him that my brother would be needing a donor’s kidney, and that, because I was only in my early twenties, I would probably be more suitable as a donor than my parents. Naturally, he was taken aback.
Not long after our first child, John was born in 1988, Christopher’s kidney function deteriorated to such an extent that the need for a transplant became imminent. My parents and I went for compatibility testing to establish our suitability as donors.
Mom’s results showed she was compatible, but that her kidneys were not functioning as well as they should, so she would need both her kidneys. Meanwhile, Dad’s results indicated he was a carrier of hepatitis, so he was not able to donate.
My results, on the other hand, showed that Chris and I were 100% compatible, almost as if we were identical twins. The doctors were overjoyed and told us that this was practically unheard of. I was both pleased and horrified.
Suddenly this was becoming a reality and I was scared. I was not yet 25, had a baby under a year old, and wanted to have another baby, so Rodney and I decided not to donate. It was the hardest decision I had ever made. I was sure my parents were upset, and that my brother would hate me. He did not hate me, of course, but must have been horribly disappointed. He was subsequently placed on the transplant list for deceased donors.
One night in 1989, I was chatting to Rodney about how sick my brother had become. (He was having radiotherapy to suppress his immune system, in order to reduce the risk of rejection should a new kidney become available, and the radiotherapy as well as the failure of his kidneys, was making him very ill.
I said to Rodney that Christopher would surely die before a kidney became available. With that, the two of us realised that we had to donate one of my kidneys to Chris. I remember jumping up and calling my mother with the news. She burst into tears of joy and concern for me, and when my brother and dad heard, they were also overjoyed.
The next three months passed by in a blur of visits to the Johannesburg General Hospital for blood tests, urine tests, X-rays, angiograms and so on… Miraculously, I had two smaller kidneys on the left side of my body, and one normal-sized kidney on the right. It was as if I was predestined to save my baby brother’s life even before he was born. The doctors decided to give him the two smaller kidneys and leave me with the “normal” kidney.
Finally, the surgery date was set for Monday, 6 November, 1989.
I was admitted on the Saturday before the transplant. We dropped our baby, John, off with my parents-in-law the night before. On my way to the hospital, I could not help but consider that I was 100% well, but would probably leave the hospital feeling terrible. On the other hand, my brother was very unwell, and would, hopefully, leave the hospital feeling a lot better. More tests followed over the next two days, and on the Monday morning I was wheeled into theatre to have my kidneys removed.
But just as I was about to be anaesthetised, the surgeon called the whole procedure off, as he had spotted what turned out to be a shadow on my kidney. This caused much consternation for us all.
More tests followed, and surgery was then scheduled for two days later. I went into theatre long before my brother did, and my surgery lasted about five hours. An hour or so before I was taken to recovery, Christopher was taken to an adjoining theatre, and another team of surgeons prepared him for the transplant. My poor parents spent an entire day with both their children in theatre undergoing life-threatening surgery. But their anxiety turned to joy when I emerged alive (albeit in a lot of pain), and Christopher’s new kidneys had begun working before he had even left the operating table.
I think that I was in High Care for one night, and in the isolation ward adjoining my brother for about another eight days. I had a cut from my hip bone almost all the way to my shoulder blade, so I was in a lot of pain, but by the Saturday, we were allowed to don gloves and masks and sit together watching television.
I recall watching the Berlin Wall coming down, and a movie (I think it was Arthur) where we laughed so much that we both needed pain killers and were scolded by the nurses.
Chris had been so sick the night before the transplant that I had brushed his teeth for him and washed his hair. We had lain in my hospital bed together and joked that perhaps he could return the favour after the surgery. A couple of nights after the transplant, he did indeed wash my hair and brush my teeth. What a miracle!
With the exception of one hiccup, where Chris’s body began rejecting the kidneys, we both healed quickly. The doctors speculated that he would keep the kidneys for at least five years. That was 30 years ago!
Every year, on the 8th of November, we contact each other and pat each other on the back for another year of good health for both of us.
About 10 years after the transplant, Chris traveled to England to compete in the Transplant Olympic Games, a wonderful achievement for him. I remember him sending me flowers that year on our transplant anniversary.
For me, one of the highlights of my life was witnessing my brother marrying his beautiful wife, Mary, in 1996. And yet another incredible moment was being at their daughter Catherine’s christening, and being made her godmother, because as my brother pointed out, she was given life because he was given a second chance at life.
For many years my brother has not taken any immunosuppressants (medicines that lower the likelihood that the body will reject a transplanted organ). And yet his nephrologist is quite satisfied with his kidney function. Chris is absolutely convinced he will live to be 100… and at this rate, I think that he will!
But our story does not end there…
Almost a year after the transplant, Rodney and I had a beautiful baby girl. We named her Dale. What we didn’t know was that this miracle baby had cystic fibrosis, an inherited life-threatening disorder which causes severe damage to the lungs, digestive system and other organs. Dale was diagnosed at the age of two.
Our son, John, was four years old at the time. History seemed to repeat itself… John has never really known his sister not to have had mountains of medicines, daily physiotherapy on her lungs (to remove the sticky mucous that cystic fibrosis causes), as well as countless visits to specialists and hospitals stays.
Miraculously, Dale is still alive and relatively well (especially considering that the doctors told us that she would not live to the age of twenty). She is married, and living a normal life, but should her lungs deteriorate, she will require a lung transplant.
Would I consider giving her one of the lobes of my lungs? You bet I would!