COTA for Hadley

Our Story

Hadley is a unique little girl, and she writes her own story (I’m just dictating it for you now). Recently, it was discovered that Hadley has an extremely rare condition called Hardikar Syndrome, documented in only nine other patients worldwide. This makes Hadley’s journey a bit unpredictable.

When she was born, she was jaundiced, and we spent a few days in the NICU at Akron Children’s Hospital. We were soon sent home and had many labs and follow-up appointments with a liver clinic. After a liver biopsy and other tests, it was determined that Hadley had Biliary Atresia, a liver disease where the bile ducts are blocked. In Hadley’s case, her gallbladder and ducts had deteriorated completely and were just scar tissue. A surgery called a Kasai procedure was performed, which ideally would buy Hadley more time without a liver transplant. Unfortunately, her body had other plans.

Within 24 hours after her surgery, her liver started to fail, which is extremely atypical of the surgery. We were transferred to the Cleveland Clinic for further monitoring. By Monday, Hadley’s liver had almost completely failed, and she was added to the transplant list.

That day, I began testing to see if I could be a match, and by the grace of God, I was. The Clinic completed all the tests and prepared for a transplant the following day.

Unfortunately, it was determined that Hadley’s bowel had also started to fail. The doctors were unsure if Hadley could even receive a transplant due to the extent of the surgery needed. They took her for surgery first.

The surgeon opened Hadley and stared at her for 30 minutes without saying anything because the damage was so extensive. They brought me down for surgery and told me they would try, but it was much worse than they had thought.

Hadley was in surgery for about 16 hours, which was about 8 hours longer than estimated. After praying harder than we ever have, Hadley survived her surgery.

Hadley’s body had sustained a lot of damage and was immensely swollen, preventing the surgeon from closing her up. Her abdomen was left open with a clear dressing on top.

The next few days were critical. Hadley was put on dialysis and had multiple scans every day to ensure her liver was functioning.

Since then, Hadley has had six additional surgeries to attempt to close her abdomen. A final surgery was done to close it completely, but as usual, Hadley’s body had other plans. The pressure from closing her abdomen put a strain on her liver and redirected the blood flow away from it. The surgeon had to take her back to the OR and reopen her abdomen to relieve the pressure.

Currently, Hadley is stable and doing better than anyone ever expected. She is waking up, moving her arms and legs, and listening to her favorite songs. It is a miracle she is alive and breathing today.

Hadley’s journey isn’t over, though. What we need now is your prayers—prayers for her surgical team, prayers for the PICCU staff and nurses, and prayers for Hadley.

I know we have been a bit distant lately, and if you have reached out and we haven’t responded, I apologize. There is a lot going on, and it is hard to keep up with everything. I appreciate those of you who have reached out. Knowing we have such a community of people who care for Hadley, even those who haven’t met her, is amazing.

God has plans for you, Hadley!

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.