December is the month when many focus on gifts. For an Illinois transplant family, December is the month to celebrate the ultimate gift — the gift of life. This family’s four-year-old is able to enjoy the sights and sounds of the holiday season this year thanks to receiving one of his mommy’s kidneys and a second chance at life. For the Bells it is a very different December than five years ago when this family received a devastating, in utero diagnosis about their little guy.
Katie and David were thrilled to find out they were pregnant with their third child. Their daughters, Addilyn and Eleanor, were very excited to meet their new sister or brother. But as the pregnancy progressed, excitement turned to anxiety. Mom Katie shares their family’s transplant story here …
Ezekiel’s journey started long before he was born. While pregnant with him and undergoing prenatal testing, the doctors said his chance of surviving was slim to none. Ezekiel was diagnosed with a lower urinary track obstruction at my 20-week pregnancy mark. There was no way for the amniotic fluid to float freely. It was all stuck in his bladder and without the fluid, his lungs would not be able to develop. We were, in fact, planning his funeral at the 20-week mark. I can still remember the emotional turmoil we were going through. The next four weeks were very hard as we waited for my sonogram. As we walked into the building to have the test done our hearts were breaking into a million pieces. We did the sonogram and the doctors told us the baby had a fighting chance. I had to undergo weekly sonograms to monitor his fluid levels and heartbeat, but we were given hope. Hope and our faith in God is what we clung to through the rest of my pregnancy.
Fast forward to 37 weeks pregnant. On February 1, 2017, David and I were going to one of our weekly sonogram appointments and it was discovered that my fluid level was too low. An emergency Cesarean section had to be performed. My planned C-section was for 39 weeks, but Ezekiel had other plans. That was one of the scariest days of my life. We still had no idea if he would be able to breathe on his own or what the outcome would be. As a Neonatal Intensive Care Unit (NICU) nurse for 10 years, I had so many thoughts running through my mind … the good, the bad and the ugly.
He came out crying! It was the most beautiful thing we had ever heard. The NICU team was right there holding our hands. He was whisked away to the NICU where doctors were able to fully examine him. Ezekiel was diagnosed with so many things following birth … lower urinary track obstruction, pulmonary hypoplasia, atrial septal defect with pulmonary stenosis and patent urachus. On Day 3 of life, Ezekiel underwent his first surgery that was quickly followed by another surgery on Day 5. In those two surgeries, doctors placed his first peritoneal dialysis catheter and bilateral ureterostomies in his back to allow urine to drain; inserted a G-tube, fixed a hernia, repaired his ruptured bladder and fixed an abdominal wall hernia. So many things for a tiny little body. We were unsure if his body would adapt or if he would need a kidney transplant. On Day 14 we were told dialysis needed to be started, which meant a transplant was in our family’s future.
On Day 31 we were able to go home! We were finally able to be a family of five. Zeke’s sisters were four and two at the time, and it was challenging to explain to them what was happening with their baby brother. We told them he was sick and when he was able to come home he would have special tubes they were not allowed to touch. At home we settled into our new routine pretty quickly. Our life was consumed with schedules … feeding, medication, dialysis, morning routine and a new nighttime routine. It was chaotic, but I would not change it for the world. Our boy was home with us, which was something we were not quite sure would be the case.
Ezekiel did well on home dialysis. But his peritoneal dialysis catheter started to not work properly in August 2017. It was inevitable that one day he would grow out of his first catheter. After a two-week hospital stay, he was able to be at home once again with a new catheter so dialysis could continue. In October 2017, we travelled five hours from our home in Dunlap, Illinois, to Cincinnati Children’s Hospital for a kidney transplant consult. We had three full days of tests and appointments; it seemed like Zeke was seen by every specialist of every body system. It was at this visit when a transplant social worker introduced us to several organizations we could research to learn more about fundraising for the mounting transplant-related costs we had faced, were facing and would face in the future. We studied the materials and determined almost immediately that the Children’s Organ Transplant Association (COTA) was something we wanted to be part of, primarily because COTA does not charge a fee for its services, and funds are available for a lifetime.
Our first introduction to COTA and reading other transplant journey stories on COTA-provided websites renewed our hope that Ezekiel was going to make it through … and so were we.
COTA received the family’s paperwork in early December 2017, and the Bell family officially became part of the COTA Family. The Children’s Organ Transplant Association (COTA) uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a team of trained volunteers. COTA is a 501(c)3 charity so all contributions to COTA are tax deductible to the fullest extent of the law, and COTA funds are available for a lifetime of transplant-related expenses.
A COTA fundraising specialist travelled to the family’s Illinois hometown to train their team of amazing volunteers. The COTA staff member discussed COTA’s fundraising process and shared information about fundraising templates, fundraising guidance and the no-cost website the volunteers and family would be given for fundraising and promoting the family’s story. This group of church friends and family members quickly got to work organizing fundraisers for COTA in honor of Ezekiel B to help with transplant-related.
Other than a surgical procedure in December 2017, we were able to have another whole year together at home, as a family of five, without any major concerns. We had monthly doctor appointments and followed up with our team at Cincinnati via phone calls every couple of months. We were simply waiting until Zeke was 20 pounds and 81 centimeters long, which are the requirements for transplant. Life was incredibly busy. Every month we squeezed in a nephrology appointment, two physical therapy sessions, two speech therapy sessions, two feeding therapy sessions as well as other medical appointments to keep Zeke growing and on track for transplant.
December 2018 brought our next hurdle. Ezekiel’s bladder was filling up with fluid and there was nowhere for it to go. He had an emergency surgery to remove it; luckily we were able to go home the same day. The time had come for David and me to be tested as kidney donors for our son. Blood tests showed we were both a match. David went through the testing first, but was ruled out as a candidate due to a challenge with his renal arteries. Then it was my turn. I met with a doctor, social worker and psychologist, had x-rays, and underwent lots of lab work (plus more) to make sure I was healthy enough to donate. After everything was done, I received clearance to donate my kidney to our son!
In the midst of all the curve balls thrown at us while waiting for Ezekiel to grow, we were blessed with an amazing team of support. Our friends who were planning and orchestrating COTA fundraisers in honor of Ezekiel B did an incredible job. Having COTA’s support was an amazing gift and allowed us not to worry about how to pay for all of the medical needs associated with transplant. COTA provided our volunteers with the tools they needed and incredible motivation to help reach the fundraising goal. Some transplant families actually go bankrupt because of all of the costs, but we did not have to fear that happening. We had COTA at our side.
July 18, 2019 … one of the best and scariest days of my life. I, Katie, was going to be giving my son a second chance at life by giving him a piece of me … my kidney. I could not have been more thankful to God I was a match. We both made it through our surgeries without complications.
Ezekiel hit so many milestones after transplant and that was yet another gift. He went from walking with moderate assistance to walking by himself in a month … eating only pureed foods to eating pancakes/crackers/spaghetti and more … talking very little to using an expanded vocabulary literally overnight. It was truly amazing to see what a difference a healthy, functioning kidney makes for a growing child. God has truly strengthened all of us through this transplant journey and continues to do so every day.
Today, the Bell family is always on the move. With demanding careers while managing school work, play groups … and Zeke’s medical care … David and Katie literally never stop. Even now they continue to be astounded by Zeke’s recovery and growth since receiving Mommy’s kidney. While they still make regular trips back and forth to Cincinnati from their Illinois home, they are breathing a little easier regarding Zeke’s long-term prognosis. Zeke will turn five on February 1st and he enjoying the life of a preschooler – just like a normal kid, which is something Katie and David wondered if he would ever do. Zeke absolutely loves school and learning, as well as superheroes, outdoor activities … and being a BIG BROTHER! David and Katie were blessed to bring another son, Lincoln Wayne, into this world in August. They report that Zeke has filled his role as Big Brother perfectly.
Zeke loves his sisters, his baby brother and is a huge helper. He has endless energy and strength. His smile lights up every room. Most importantly, Zeke is very happy to be sharing his room with Baby Lincoln. He continues to amaze David and Katie each and every day.
During this month of gifts, gratitude and joy, Katie shared these thoughts about COTA. “We will never forget the role COTA has played in our family’s transplant journey to date. We are thankful for COTA’s ongoing encouragement and guidance and their compassion. They gave us hope. COTA was the calm in our storm and the peace of mind we received was (and is) immeasurable. COTA was at our side during a time of crisis for our family; we are so grateful to know the gift of COTA is they will continue to travel with us … for a lifetime.”
This Christmas will likely be full of celebration and joy for the 6 Bells as they enjoy the holidays in their own home. For Katie and David, simply being able to enjoy the chaos of the holiday with four kids is the only gift they need under their family’s Christmas tree for many years to come.
***Report Courtesy of the Children’s Organ Transplant Association (COTA)***
