March is National Kidney Month, which is month-long, awareness-raising grassroots effort that is utilized to spread the word nationwide about the importance of kidney health. A Georgia family knows firsthand about the life-saving difference healthy kidneys can make.
Rebecca and Seth Harding of Cumming, Georgia, remember December 2008 as a month of surprises. Rebecca was 15 weeks pregnant with their first child, and they had just moved cross country to the Atlanta area. On the first day in their new city, Rebecca found herself in a High Risk Imaging Clinic having an ultrasound test done after a routine prenatal exam identified, ‘a spot worth checking into.’ After several doctor visits and many more tests, their baby boy was diagnosed in utero with Posterior Urethral Valves (PUV), which is an extremely rare condition that affects about 15 of every million births. Rebecca and Seth were told she would likely miscarry before the baby reached 20 weeks.
Rebecca spent the final two months of pregnancy living in the high risk pregnancy hospital ward where Ephraim was ultimately born via cesarean section. The day of Ephraim’s birth (May 18, 2009) was oddly peaceful, but Seth was told before entering the delivery room that Ephraim would not likely come out of the room alive. Fortunately, that was not to be the case.
Ephraim spent his first month in the NICU at Children’s Hospital of Atlanta where he underwent tests, surgical procedures and constant monitoring of vitals and lab work. The doctors were puzzled. His kidneys were operating at a dangerously crippled rate, his urine was bloody and concentrated, but both his kidneys and urinary tract were technically functioning. The decision was made to forego dialysis at this point and just wait to see what his body would do. Despite the odds, Ephraim maintained that level of functioning for several years without dialysis.
Those years, however, were not without their share of drama. Those years saw multiple surgeries for multiple reasons, the introduction of feeding tubes/machines, numerous hospitalizations for urinary tract infections, kidney infections, severe dehydration, dangerous lab results — the Harding’s home was turned into a medical clinic. But Ephraim’s kidneys, despite the lack of any growth, refused to completely fail.
In March of 2013, Ephraim’s health took a severe turn for the worse and the transplant conversation became reality. By May, Ephraim entered End Stage Renal Failure and he was placed on Hemodialysis three times a week. It was during these upside down days that the family was introduced to the Children’s Organ Transplant Association (COTA). Rebecca remembers that COTA quickly became one of the few bright spots in a life filled with doctors, hospitals and insurance companies.
According to Rebecca, “After our son’s kidneys failed and he was diagnosed with End Stage Renal Failure we were overwhelmed by the endless burdens of Hemodialysis, life-saving medications, blood line infections, countless hospital stays and the bills that soon followed. We were fighting with insurance companies, drowning in paperwork and drowning in fear. We were already so overwhelmed simply keeping our family together and keeping Ephraim alive that the thought of figuring out how to pay the bills was a monumental struggle. We knew we weren’t the only family to ever face such difficulties. My husband and I made the phone call that changed everything.”
“From the moment of first contact COTA sparked hope in our hearts that one day our son’s story would be heard and that the people in our community would be moved to action, even if that meant becoming a registered organ donor. We were astonished at how caring, loving and knowledgeable everyone at COTA was. With each phone call, email or text the staff’s first priority was always our family and we could sense their genuine concern for our son. They always asked for updates on how he was doing, how we were faring as a family and they constantly provided resources we did not know existed. They answered every question we had and made themselves available at a moment’s notice to ensure we and our COTA volunteers were taken care of.”
“Because of the boundless generosity of our COTA volunteers and the unparalleled support from COTA, our family’s story spread. Individuals from all over the world offered to become our son’s kidney donor after my husband and I were ruled out as candidates; people were writing and calling saying they were moved to sign their donor cards so one day they could save a life like Ephraim’s; and a well established film crew out of Los Angeles offered to put a short video together for us to use to spread awareness.”
“Once we became a COTA family doors began to open, opportunities began to present themselves and hope … hope began to grow.”
After numerous living donor candidates had been tested and turned away, Seth and Rebecca were approached by Ephraim’s Sunday school teacher, Veronica, who asked if she could be tested. The Harding family’s world changed at that moment. Her tests were expedited and the process went faster than it had with all the other potential donors. She was a perfect match and on October 24, 2013, she donated one of her kidneys to Ephraim.
“COTA has celebrated with us every step of the way and has taken the monumental financial struggle and turned it in to the biggest set of blessings our family has ever seen. We might be considered one of COTA’s families but we can assure you, it is the other way around. We consider COTA an extension of our own family now,” said Rebecca and Seth.
“Thank you, Children’s Organ Transplant Association, for giving us so much more than an avenue to raise funds and awareness … you gave us an avenue for hope.”
Today, Ephraim fights viruses and infections, but he is currently stable with a very positive prognosis. In just a few months when he celebrates his 6th birthday with sisters Elliana and Evelyn, he will be eating lots of his favorite foods, including Chick-fil-A chicken nuggets and pizza. He will likely be opening shiny boxes full of cars, trucks and trains, while wearing his favorite transplant surgeon dress-up costume.
When asked about his hope for the future, Ephraim has an answer. Ephraim hopes that Sulley (his transplanted kidney) lives a long and happy life, and keeps him out of the hospital and off dialysis forever.
COTA hopes that, too, Ephraim!
For more information about the Children’s Organ Transplant Association, or to find a COTA family in your area, please email gro.a1511548910toc@m1511548910ik1511548910.