COTA for John Strong

Our Story

We welcomed John Carl to our family on October 27^th, 2021. It was a “regular” pregnancy without any surprises. A few weeks before John’s due date Rachel and I had a regular appointment with the OB-GYN and that is when we first learned of the issues. John had not grown as expected and the doctor requested an ultrasound. It was discovered that John had a blockage in his urethra and the fluids were not emptying but instead had backed up to John’s kidneys and lungs. The doctor told us to go to Vanderbilt that day and deliver the baby. John was delivered via caesarean section and immediately taken to the Vanderbilt NICU. In the coming weeks we would learn the extent of John’s medical needs including kidney, heart, and lung issues. John was put on a ventilator and had chest tubes in his lungs to drain the fluid. John was also on numerous medications to manage his condition and pain and showed very little movement. John would grip our finger, but that was the extent of any movement for the first few weeks. We received many thoughts and prayers from our church family and friends. After a month John’s lungs developed enough to come off the ventilator. John was released from the NICU after two months just in time for his first Christmas at home! We are thankful for the expert care John received while at the Monroe Carell Jr. Children’s Hospital at Vanderbilt. John was later diagnosed with stage 5 chronic kidney disease. We manage John’s CKD through a low potassium formula, extensive medications, and monthly blood work and doctor’s appointments. We also take great care in keeping John healthy to avoid any infections. We struggled with getting weight added and for that reason John had a gastrostomy tube inserted in his belly. This significantly improved John’s weight gain and enabled Rachel and I to give John added feedings at night. During this time John also had craniotomy surgery to reshape his head. We always knew John would need a kidney transplant, but we needed to wait until John was the minimum weight to be put on the transplant list. Rachel started testing to see if she would be a good candidate for transplant. After numerous procedures and reviews by the doctors it was determined that Rachel was an excellent match! John will be receiving mom’s kidney at Monroe Carell Jr. Children’s Hospital at Vanderbilt. We are so thankful for the support and prayers from family and friends. Thank you for your generosity, your prayers, your support, our community, our amazing friends and family. We are excited to see what the future holds for this wonderful child and our family. It is amazing to see how far John has come these past two years! We are also thankful to the entire team at Monroe Carell Jr. Children’s Hospital at Vanderbilt!

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.