Bloomington, Indiana – March 1, 2016 — March is National Kidney Month, which is a month-long, awareness-raising grassroots effort to spread the word nationwide about the importance of kidney health. A Tennessee family knows all too well about the life-saving difference a healthy kidney can make.
Amy and Michael Wade of Memphis, Tennessee, are quick to explain their son’s transplant journey started in utero. It was at 14 weeks gestation during a pregnancy check when the young couple was told the fetus had post urethral valves, which is an extremely rare condition affecting about 15 of every million births. This meant that urine trapped in the baby’s bladder eventually backed up into the tiny kidneys while they were forming and traumatized them. At that point, the doctors told Amy and Michael the baby would likely not live. If he did, he would need a kidney transplant to survive. The Wades chose to continue their pregnancy and to pray for the best possible outcome. On September 15, 2012, Walker Wade was born to his delighted parents who were only allowed to hold him five minutes before he was rushed to the NICU for a month-long stay.
According to Amy, it was a very scary time for this young family. “New nurses, doctors, rounds, bells, screaming babies and hospital policies dictated every hour of Walker’s entire first month of life. It was all very necessary though. During that month we learned how to care for an infant with special medical needs, and how to work hand-in-hand with doctors to try and keep him off dialysis as long as possible.”
One of the main adjustments was Amy would have to quit her job and stay home to care for this fragile baby. The Wades knew a kidney transplant was Walker’s only chance at long-term survival, but they also were told he had to be at least 22 pounds before a transplant could be performed.
All three Wades left the hospital on October 17, 2012, and for the first time took the tiny baby home. They were tired, scared and very much ready to sleep in their own beds. The months that followed were filled with doctor visits, medical tests, medications and increasing levels of stress as they waited for Walker to gain weight and get stronger.
Around the time of Walker’s first birthday, the family’s kidney specialist decided it was finally time to start talking transplant. Walker weighed 22 pounds and he met the height requirement. Transplant preparations began, including having family members tested to see if living donation would be possible. However, in December 2013, Walker’s kidney function declined tremendously. “We were inpatient for about a week rehydrating Walker’s kidneys and getting his labs stabilized. The gift? We left the hospital without a dialysis catheter,” Amy said.
The reality for Amy and Michael was that it was extremely difficult to manage Walker’s hydration at home. Every two hours special broth had to be administered via a gastronomy tube and they prayed he would not vomit. No matter what they did, Walker vomited every single morning and sometimes all day long. “We were ALL tethered to the cords of the machinery and Walker’s condition. All day, every day, and every night, all night – hydrate, hydrate, hydrate. It was exhausting to say the least,” said Amy.
The family’s sole focus became a kidney transplant. Amy and Michael started to prepare all aspects of their lives. They were introduced to the Children’s Organ Transplant Association (COTA) as a potential safety net for transplant-related expenses, and they decided to sign the agreement right away. Amy remembers that COTA quickly became one of the few bright spots in a life filled with doctors, hospitals and insurance companies.
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 trained volunteers. In late November 2013, a COTA fundraising specialist traveled to Memphis to meet with the volunteers for the COTA campaign in honor of Walker Wade and walked them through the entire process. Within days of the on-site training, this COTA team was off and running, and within the first year, these COTA volunteers raised more than $75,000 for transplant-related expenses.
“COTA is a 501(c)3 charity so contributions to COTA in honor of Walker are tax deductible to the fullest extent of the law, and these COTA funds are available for his lifetime,” Amy explained. “From the first moment we started working with COTA, we felt a sense of relief.”
Amy underwent extensive medical testing to determine if she could be Walker’s living donor. The family chose to work with the pediatric kidney transplant team at Cincinnati Children’s Hospital in Ohio. Both Amy and Walker traveled there in early May 2014 for more testing and assessment. By August 2014, after numerous long trips and lots of medical tests, Walker and Amy were approved for transplant. On November 4, 2014, Walker and Amy slept side-by-side at Cincinnati Children’s as mom’s kidney was passed to her son’s body. To this day, talking about it makes Amy tear up with emotion. One of many miracles Amy talks about is that her kidney started working for Walker before it was even attached to his bladder.
According to Amy, “To date COTA has paid for all of the transplant-related expenses not covered by our insurance. It has been amazing. From our expensive travel and numerous trips between Memphis and Cincinnati, to all of the medical bills, to all of the many, MANY medications to even getting our house scrubbed and in order for our return home with an immune-suppressed toddler … everything has been paid for with COTA funds.”
“Thanks to COTA, the hope for our family’s future looks much brighter because the financial strain from Walker’s medical bills has been taken care of by this amazing organization. We didn’t have to sell a car or move to a different neighborhood in order for our son’s life to be saved. If that’s not giving hope to a family, we can’t think of anything that would,” said Amy and Michael.
Today, Walker fights viruses and infections, but he is currently stable with a very positive prognosis. Walker is a ball of energy and he definitely keeps his parents on the run. He loves to play outside and his favorite trip involves going to the zoo to see the animals. Walker is a big fan of the movie Finding Nemo in which one of the beloved characters, Dory, repeatedly says, “Just keep swimming!” What an appropriate mantra for this hope-filled COTA family
For more information about the Children’s Organ Transplant Association, or to find a COTA family in your area, please email gro.a1511327553toc@m1511327553ik1511327553.