A Good Reason to Register as an Organ Donor
By Ursula Neal
On August 2, 1999, Kelligar Keagan Neal “Kelli” was born at Scottsdale Healthcare Shea in Scottsdale, Arizona. While pregnancy and delivery were both uneventful, Kelli presented with breathing challenges shortly after birth. As long as she was crying, her color looked good, but once she stopped, she turned purple.
After five hours in an oxygen tent and a battery of tests, the doctors decided that her problems were beyond what their nursery was capable of handling. In less than an hour, I would say goodbye to my newborn daughter so she could be transported via helicopter to Phoenix Children’s Hospital. Due to complications in the air, immediately upon landing Kelli was put on a ventilator (assisted breathing machine). No one knew at that time that it would be many months before she would come off the ventilator, and that there would be many trials and tribulations that would trouble Kelli and her family along this journey.
Kelli spent the next two months at Phoenix Children’s Hospital, where she underwent every type of test and analysis the staff could come up with. However, other than confirming she had deficient lungs, as evidenced by continually increasing ventilator assistance, no confirmation fight. So, against the advice of many medical professionals, we decided not to take Kelligar off the ventilator and, instead, to pursue the option of a double-lung transplant. Within a couple weeks, Kelli was transported from Phoenix Children’s Hospital to St. Louis Children’s Hospital. Remarkably, at just three months old and after only 19 days on the national waiting list, Kelli received her life-saving transplant, for without a transplant she had no chance of survival.
Kelli then became like any other child. She loved to play! Like most girls, she loved pink and purple and all that glittered and sparkled. She loved to sing and one day hoped to have a band of her own. She was sweet, loving and forgiving. She embraced life and life embraced her. She was a charismatic firecracker.
It has been said that, “life is a journey, not a destination.” Kelli’s journey was marked with many ups and downs and many battles which most were sure she would not survive. The months that followed her birth resembled a waking nightmare, in retrospect, surreal like the twilight zone. However, for every door that closed on her there were a hundred windows that were opened. Her strong will to live, the wonderful technology available today, and the blessings bestowed on her are nothing less than miraculous. For her, every day was a party. Her life put the rest of our lives in perspective and keeps us grounded. We are delighted and proud that we were entrusted with her care here on earth. The world is a better placebecause she was born and lived. We are forever grateful to her donor and donor family. They are with us always.
Editor’s Note: Ursula Neal has served many years as the Organ
Donation Registration Chair for Unity of Phoenix; you will see her and other members of her family at each and every organ donor event that Unity of Phoenix sponsors. Those who don’t know the Neals may believe they randomly volunteered to staff the Organ Donor table, but their story goes far deeper than that.
Ursula’s daughter, Kelli, was born dying with highly deficient lungs. She was give 0% chance of living, and the family was told that their only option was to take her off the ventilator and let her die. Refusing to accept that option, the family began searching for other solutions. By some miracle, all things came together, and Kelli was transferred to Children’s Hospital in St. Louis for a double lung transplant that saved her life.
After getting Kelli home and stabilized, the Neal family began volunteering in whatever capacity they could to help with tissue and organ donation. Their daughter’s story is one of both triumph and sadness. Tragically, Kelli succumbed to illness on January 3, 2011 ... but the lung transplant she received as an infant granted her 11 beautiful years with her loving family. Ursula agreed to share their story here to help reinforce the powerful gift of organ donation. A single donor can help up to 75 people with tissue donations, alone. There is such a shortage of organs; many people who are waiting for organs die every day.
Unity of Phoenix joins the Neals in hoping that, after reading their story, you may be inspired to register as an organ donor at our next Organ Donor Registration event on May 5 and 12.