CHRISTOPHER'S JOURNEY:
FROM TERMINAL TO TRANSPLANT
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The year 1995 was a tumultuous year. I was expecting our third child, and it was during a routine scan that we discovered Christopher had renal complications. I was 27 weeks pregnant, it was a wet and rainy winter, and the house we were renting was put on the market. Amidst the people traipsing in and out of our home, trying to keep two little girls out of their way, and all the while weathering the concerns of baby Christopher's future made for a difficult winter.
At 36 weeks gestation, Christopher had no more amniotic fluid left and was delivered via C-section. He weighed in at 2.68 kg's and announced with a healthy set of lungs that he had arrived and was here to stay. Our Pediatrician however, informed us that his renal failure was severe and that we should prepare ourselves for the possibility of our new-born son not surviving. The Doctors knew that posterior urethral valves had caused the complications and decided, on day 5 to perform the surgery necessary to alleviate the pressure on his already distended bladder. Bilateral ureterostomies were performed. Peter wrote to our intercessors, and many prayers went out on Christopher's behalf. God heard our petitions and one of Christopher's kidneys recovered some function. After a total of three weeks in ICU, we were allowed to bring him home, and a new journey of caring for a child with compromised health began.
God wonderfully enabled our Mission to purchase the home we (still) live in and we were mercifully relieved of the worry of where we would live. Our visits to the nearby Red Cross Children's hospital became a regular part of our life and we became very familiar with the Renal Department. At 18 months, the ureterostomies were reversed and his right kidney was removed. He was left with one kidney, which had a filtration rate of roughly 50%.
Over the next few years, various predictions were made regarding his future, and it seemed we would be facing a kidney transplant by the time Christopher was two years old. But Christopher kept confounding the dire predictions of the experts. At one point he needed to be fed via a gastro-tube during the night, and this experience ushered in a new experience of health care for us. By now, I was several months pregnant with our fourth child, and so we hired a night time care giver to administer the feeds three nights a week. Peter's mother Ingrid would often come to stay the night and sit next to Christopher's bed as he received his much needed nourishment. What complicated this chapter was that 80% of the time, he would vomit up the night feed. It felt as if we were taking one step forward and half a step backward every night.
By the time our son Calvin was born, in 1999, Christopher seemed to be flourishing. Even though the Doctors kept predicting the imminent need for a kidney transplant, Christopher kept on improving and developing at a reasonably normal rate. The only thing that was visibly slowed was his growth rate. He never quite made it into the normal height and weight 'curve' for his age group.
With the onset of puberty, and thus a progression of growth, his renal function began to slowly deteriorate. Peter and I had discussed with the Doctors that we would want to transplant pre-emptively, rather than having Christopher facing Dialysis. So when the time was right, Peter was sent for testing and was thoroughly examined to see if he would be a suitable donor. Peter's cholesterol and blood pressure levels were considered just over the normal limit though, and he was turned down as a donor. So I was next. Months of exams and tests determined that I was in good health, and that I was the best match for Christopher.
The timing of the transplant seemed to be forever illusive. My parents were still living in South Africa at the time, and were of course hoping to be here for the operation. As the months went by, God called Mom and Dad back to the US for health reasons. This was particularly sad for me, because I knew we would face this difficult time in our family's journey without them being present.
Finally, in November 2009, we were given a date. Bear in mind that both the hospitals we were using are government hospitals, and the waiting list for Theatre time can be extensive. Nevertheless, on November 18th, two days after I had turned 49 we were both in our respective beds, in our respective hospitals, hooked up to IV infusions, awaiting an early morning theatre time. By 10:30pm however, everything was called off due to an emergency cadaver transplant that needed to precede our operation. With limited doctors, limited Theatres and limited resources there was no other choice. There is only one team of transplant doctors! So we were sent home. It was an anti-climax to say the least. But God was good, and we were given December 2nd as a new operating date. This time all went well. By this time Christopher's remaining kidney function was down to less than 5%.
My kidney was transported to Red Cross Children's hospital in good time and the four hour operation on Christopher was deemed mostly successful, with some minor difficulties. In the end though, these complications turned into months of snags and serious delays. The graft kidney was not 'kicking in' and Christopher was in end stage renal failure now. Eventually he was prepared for dialysis at the same time as a nephrostomy was performed. It was this that allowed the creatine levels to begin plummeting and fortunately dialysis was never needed. But we still faced weeks and weeks of problems and complications. After the nephrostomy was reversed, his creatine levels began to rise again. Finally, in March 2010 Christopher faced his 11th operation, where his own native ureter - which was left from his nephrectomy at 18 months - was anastomosed to the graft kidney. This operation, though very painful and difficult to recover from, ushered in the beginning of Christopher's recovery. Several further procedures were needed. His weeks at the hospital had turned into months.
Sadly, at one point they suspected Christopher was beginning to reject the graft kidney, and he was given very large doses of immunosuppressant drugs intravenously. This happened on two occasions. In the meantime they tested for a certain virus, which takes a long time to get results for. This particular virus shows up on blood work as if the patient is rejecting the organ, but in reality is a virus which damages the graft organ and feeds on immunosuppressant drugs. So by the time we realized it was this virus, we had already been 'feeding' it, and allowing it to flourish. Nothing can be done about the virus.
Christopher started out with a cacophony of drugs three times a day. It became a daily ritual of sitting down and reading off each medicine and taking great care not to miss one. At this point he is down to only 8 different medications. The steroids Christopher takes have to be balanced very carefully, and after months of bi-weekly visits, then weekly visits, we are now down to monthly visits to the Renal Clinic. If the dose of steroids is too high, growth is impaired and the kidney suffers damage. If the dose is too low, he is at risk of rejecting the kidney. Christopher will need to be carefully monitored for the rest of his life.
We are grateful for the excellent care we have received. For sure, there were times when complications could have been avoided, but overall, we have been very happy with how this chapter of our life was handled by the Doctors. Christopher has been given a new lease on life. Already he has better health and fitness than he has ever enjoyed. He is fully involved in sports, Scouts, camps and mountain hikes. We look forward to what God has in store for him. As a family, we are indebted to you all for years of prayer and perseverance in intercession on our behalf. 'Thank You' seems inadequate.
The year 1995 was a tumultuous year. I was expecting our third child, and it was during a routine scan that we discovered Christopher had renal complications. I was 27 weeks pregnant, it was a wet and rainy winter, and the house we were renting was put on the market. Amidst the people traipsing in and out of our home, trying to keep two little girls out of their way, and all the while weathering the concerns of baby Christopher's future made for a difficult winter.
At 36 weeks gestation, Christopher had no more amniotic fluid left and was delivered via C-section. He weighed in at 2.68 kg's and announced with a healthy set of lungs that he had arrived and was here to stay. Our Pediatrician however, informed us that his renal failure was severe and that we should prepare ourselves for the possibility of our new-born son not surviving. The Doctors knew that posterior urethral valves had caused the complications and decided, on day 5 to perform the surgery necessary to alleviate the pressure on his already distended bladder. Bilateral ureterostomies were performed. Peter wrote to our intercessors, and many prayers went out on Christopher's behalf. God heard our petitions and one of Christopher's kidneys recovered some function. After a total of three weeks in ICU, we were allowed to bring him home, and a new journey of caring for a child with compromised health began. 
God wonderfully enabled our Mission to purchase the home we (still) live in and we were mercifully relieved of the worry of where we would live. Our visits to the nearby Red Cross Children's hospital became a regular part of our life and we became very familiar with the Renal Department. At 18 months, the ureterostomies were reversed and his right kidney was removed. He was left with one kidney, which had a filtration rate of roughly 50%.
Over the next few years, various predictions were made regarding his future, and it seemed we would be facing a kidney transplant by the time Christopher was two years old. But Christopher kept confounding the dire predictions of the experts. At one point he needed to be fed via a gastro-tube during the night, and this experience ushered in a new experience of health care for us. By now, I was several months pregnant with our fourth child, and so we hired a night time care giver to administer the feeds three nights a week. Peter's mother Ingrid would often come to stay the night and sit next to Christopher's bed as he received his much needed nourishment. What complicated this chapter was that 80% of the time, he would vomit up the night feed. It felt as if we were taking one step forward and half a step backward every night.
By the time our son Calvin was born, in 1999, Christopher seemed to be flourishing. Even though the Doctors kept predicting the imminent need for a kidney transplant, Christopher kept on improving and developing at a reasonably normal rate. The only thing that was visibly slowed was his growth rate. He never quite made it into the normal height and weight 'curve' for his age group.
The timing of the transplant seemed to be forever illusive. My parents were still living in South Africa at the time, and were of course hoping to be here for the operation. As the months went by, God called Mom and Dad back to the US for health reasons. This was particularly sad for me, because I knew we would face this difficult time in our family's journey without them being present. 
My kidney was transported to Red Cross Children's hospital in good time and the four hour operation on Christopher was deemed mostly successful, with some minor difficulties. In the end though, these complications turned into months of snags and serious delays. The graft kidney was not 'kicking in' and Christopher was in end stage renal failure now. Eventually he was prepared for dialysis at the same time as a nephrostomy was performed. It was this that allowed the creatine levels to begin plummeting and fortunately dialysis was never needed. But we still faced weeks and weeks of problems and complications. After the nephrostomy was reversed, his creatine levels began to rise again. Finally, in March 2010 Christopher faced his 11th operation, where his own native ureter - which was left from his nephrectomy at 18 months - was anastomosed to the graft kidney. This operation, though very painful and difficult to recover from, ushered in the beginning of Christopher's recovery. Several further procedures were needed. His weeks at the hospital had turned into months.
Sadly, at one point they suspected Christopher was beginning to reject the graft kidney, and he was given very large doses of immunosuppressant drugs intravenously. This happened on two occasions. In the meantime they tested for a certain virus, which takes a long time to get results for. This particular virus shows up on blood work as if the patient is rejecting the organ, but in reality is a virus which damages the graft organ and feeds on immunosuppressant drugs. So by the time we realized it was this virus, we had already been 'feeding' it, and allowing it to flourish. Nothing can be done about the virus.
Christopher started out with a cacophony of drugs three times a day. It became a daily ritual of sitting down and reading off each medicine and taking great care not to miss one. At this point he is down to only 8 different medications. The steroids Christopher takes have to be balanced very carefully, and after months of bi-weekly visits, then weekly visits, we are now down to monthly visits to the Renal Clinic. If the dose of steroids is too high, growth is impaired and the kidney suffers damage. If the dose is too low, he is at risk of rejecting the kidney. Christopher will need to be carefully monitored for the rest of his life.
We are grateful for the excellent care we have received. For sure, there were times when complications could have been avoided, but overall, we have been very happy with how this chapter of our life was handled by the Doctors. Christopher has been given a new lease on life. Already he has better health and fitness than he has ever enjoyed. He is fully involved in sports, Scouts, camps and mountain hikes. We look forward to what God has in store for him. As a family, we are indebted to you all for years of prayer and perseverance in intercession on our behalf. 'Thank You' seems inadequate.
