Bloomington, Indiana – June 2, 2015 — June is a month full of family and fun … especially on the third weekend of the month when families gather to celebrate dads. Father’s Day has become a very special holiday for the Buurstra family of Snohomish, Washington. They experienced a miracle when their son, Isaac, received one of his daddy’s kidney’s … and a second chance at life.
Isaac’s transplant journey really began before he was born. Paige Buurstra, Isaac’s mom, had an ultrasound when she was 18 weeks pregnant that showed their unborn baby had a blockage in his urethra. This blockage had distended his bladder to about 10 times the normal size and threatened to take over his entire abdominal and chest cavity. Paige and Tim, Isaac’s dad, were told this would likely be fatal to the baby before, or shortly after, he was born.
Paige carried the baby for another 19 weeks, wondering every day if it would be the last day she would be the baby’s mom. During these 19 weeks, Paige and Tim met with specialists who told them what life would be like living with End Stage Renal Disease (ESRD) if the baby did survive. Paige remembers praying that the baby would not survive so he would not have to endure a lifetime of dealing with ESRD.
The week before his birth, Paige and Tim met with the prenatal team who would be caring for the baby in the Seattle Children’s Hospital neonatal intensive care unit. This was the first time Paige and Tim really understood the baby was dealing with other life-threatening issues. They were told the baby could either be born not able to breathe or urinate, and he would have about two hours of life … or he could come out screaming and urinating and could have a full life ahead of him. Miraculously, Isaac was born on February 6, 2012, both screaming and urinating.
After three days, Isaac underwent his first surgery to have his urethra valves removed. After 15 days in the hospital, Isaac came home, but he was heavily dependent on several medications and a feeding pump to prolong his natural kidney function as long as possible.
Even though dialysis was imminent, Paige found herself going to great lengths to prove the family’s life could continue as it had been prior to Isaac’s birth. Paige returned to work, the family of four (including Isaac’s older sister, Madelyn) took trips to the zoo and they all went out to dinner. Paige and Tim hoped there would be a few surgeries, a few short hospital stays, a dialysis machine that ran at night and hoped the entire situation would not significantly impede the family’s daily activity.
On April 16, 2012, those hopes were shattered. Rushed to the hospital, Isaac was barely able to pull a breath in and his blood pressure was three times higher than normal. Tim went to the chapel on one side of the hospital while Paige sat in the in the ICU lobby on the other — each of them crying the tears that only a parent facing the death of child can cry.
Tim remembers pleading with God, “If you are going to take him, take him now,” knowing the longer Isaac was with them, the harder it was on Isaac, and the harder it would be to lose him. That night Paige experienced a different kind of dying. She remembers, “It was the dying of idealism, of preference, of selfishness. I found myself resigning myself to God, ‘God, I will do anything, I will endure anything, for this child, if you let him live.’”
Isaac lived through the night and remained in the hospital for eight weeks, surviving many medical ups and downs in the process of preparing his tiny, three-month-old body for dialysis.
Paige recalls, “It’s hard to find words to describe ‘hospital life.’ The hospital is an hour away from our home. We traded off nights staying at the hospital with our son and staying at home with our daughter who was three at the time. Tim and I only spent a handful of nights together. We made friends with other people whose children were dying. I sat in a room with my friend as she held her daughter for the last few hours of her life. Their precious little girl had also been born with kidney failure. You ask yourself questions without answers like: Why does my son get to live while her daughter doesn’t? The other families’ stories will haunt me forever.”
When Isaac moved back home, Paige and Tim were hopeful life would normalize. That was not to be the case. Isaac was hooked to his dialysis machine 14 hours each day, which required a lot of juggling of the couple’s work schedules. In addition, Isaac’s medications had to be administered every six hours. On top of that, Isaac threw up several times a night. He had blood draws at the hospital every Monday and every Thursday. After about two months of this ‘new normal,’ Paige decided she had no choice but to quit her job.
The Buurstra family soon learned how hard life can be with a child on dialysis. Paige had to order supplies and medications from three suppliers and two pharmacies all at different times. One month of supplies would have filled a 12’x8’ wall, floor to ceiling. Bathing and changing a diaper was a daily ritual that required lots of time and patience due to Isaac’s tubes. Isaac threw up at least five to seven times per day, every day for the first year of his life. In order to minimize the vomiting, he had to be fed small amounts every 90 minutes and then was on a constant feed all night. He did not learn to eat, and because of that he did not learn to speak. He had speech and feeding therapy every other week. Isaac’s muscles did not develop normally, and despite having weekly physical therapy, he did not learn to crawl until he was 15 months old. Isaac was hospitalized for so long that he had to wear a helmet for six months to reshape his head.
According to Paige, “Life with a kid on dialysis was exhausting and isolating. There is no respite offered to dialysis parents. There was no one who could hook Isaac up to his machine. We couldn’t leave our house to just get away for the weekend. It was difficult to go out with friends and nearly impossible for Tim and I to go out on a date. We had to be home every night by 8 pm to get Isaac hooked up to his machine. There is nothing to compare to this type of isolation.”
Isaac had his transplant evaluation at 13 months. Paige and Tim were told Isaac needed to grow before donor evaluation could begin on both of them. It was at this point when Paige and Tim started to get a picture of what the financial burden would like for the family: gas expense of driving 100 miles roundtrip to the hospital three times a week … potentially eight weeks without Tim’s salary … clinic visits with multiple providers requiring co-pays … co-pays for blood labs … hundreds of dollars in medication co-pays every month. During this time of waiting for donor testing, the Buurstra family was introduced to the Children’s Organ Transplant Association (COTA).
COTA uniquely understands that parents who have a child or young adult facing a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of volunteers. A COTA fundraising specialist traveled to Washington to meet with the COTA for Isaac B volunteers and walked them through the entire process.
“We cannot imagine anything worse than having to worry about how to pay medical bills when your child is dying. COTA gave us hope because we could actually spend our energy focused on our family and not our finances. COTA has also given us hope for Isaac’s future … hope there will be funds available to help pay for medications and other transplant-related expenses when he can no longer be on our insurance,” they said.
It was soon discovered that both Paige and Tim were matches, which meant that either of them could proceed with testing to be Isaac’s donor. After much discussion, it was decided Tim would be Isaac’s kidney donor with the transplant date set for November 26, 2013.
Paige vividly remembers the actual transplant timeline. “We checked Isaac into the hospital on November 25th. When they took Isaac back for surgery the next morning around 9:30 am, I knew they had just made the first incision in Tim five miles down the road at the University of Washington. I was given updates every two hours. The only time I felt really nervous was between 1 pm and 3 pm. Tim’s kidney was supposed to arrive around 1 pm, but mid afternoon it still hadn’t arrived. Then Tim’s brother called and said the ambulance had just left with the kidney. As we were talking, I heard the ambulance arrive. Around 5:30 pm, the surgery team called to let me know that blood was flowing to Isaac’s new kidney. I took a deep breath for the first time in months, and I cried.”
Isaac has had a few serious infections since his transplant, but overall life is immeasurably better. Isaac is an active, happy boy who loves the outdoors and loves anything belonging to his big sister. There are still regular appointments at Seattle Children’s Hospital, but he is relatively stable for the first time in his life. Isaac still has speech therapy, feeding therapy and physical therapy, but he is rapidly making progress. According to Paige, the Buurstra family now takes trips to visit friends and family …. and they stay out late when they want. Paige adds, “When we decided to raise funds for transplant-related expenses through COTA, we had no idea the greatest gift would not be the monetary contributions, but the love that flowed from our community through our COTA team. It has been something almost supernatural.”
This is the Buurstra family’s journey so far, and they are well aware that a second transplant is likely somewhere down the road. But for this family, Isaac’s transplant has been a reprieve, a breath of air, for the first time since Isaac was born.
Truly the best Father’s Day gift.
For more information about the Children’s Organ Transplant Association, or to find a COTA family in your area, please email gro.a1475058560toc@m1475058560ik1475058560.