June 12, 2007 > The best Father's Day gift ... a son's second chance at life (edited)
The best Father's Day gift ... a son's second chance at life (edited)
By Phillip Nesbitt
My son, Myles Nesbitt, was born on March 14, 1995. He weighed well over eight pounds and his cry sounded very healthy. In the brief time that my wife, Ginger, and I were allowed to spend with him after his birth, it was never apparent that he was so sick. But before I could even process the joy in my heart, our son was whisked away and taken to the ICU for a battery of tests. My gut feeling was that he would spend a brief period in the hospital and then we could take him home.
It was a couple of days after his birth that everything changed. I received a phone call at work asking that I come to the hospital immediately. The doctors met with us in a room near the ICU and began explaining Myles' medical problem. We were told that Myles had very little kidney function, and then we were informed that he probably would not live longer than three months. The doctors' last direction was to enjoy and love him as much as possible. We were devastated.
Several days later we were introduced to Dr. Sheldon Orloff, whom I will always remember as the doctor with the funny ties. He told us that the official diagnosis for Myles was End Stage Renal Disease and that only one kidney was functioning - and then only at 20% of normal. Additionally, the damage to the kidneys was permanent.
Within one week of his birth, Myles underwent surgery. It was successful and we were able to take Myles home. Once home, my hope was that Myles would not have to return to the hospital, and that somehow his body would miraculously correct all that was wrong. Unfortunately, this was not our reality. In our refrigerator, the milk shared shelf space with medicines that had to be kept cold. In our cupboards, canned foods and boxed mixes moved over to make room for countless bottles of pills.
Just as I started to get a handle on our home's transformation and our lives' upheaval, a hospice nurse named Linda started coming to our house several times a week. She would play with Myles and talk to Ginger and Tucker, our older son. As time went on, fewer medical appointments were necessary. Then, as summer started, we received even better news ... we were removed from the hospice program. It was a major milestone for our family.
As a family, we endured this lifestyle for more than eight years. Myles defied all odds by surviving - and thriving. These years were not easy for me: Myles had a severely restricted diet, innumerable medications and constant injections ... and I had the ever-present fear that today might be his last day with me. My son deserved a second chance at life and although we knew a kidney transplant was his only chance, we had no idea when the transplant would happen. It was an agonizing waiting game that took a tremendous toll on each one of us.
In October 2003, the inevitable happened. Within a day of negative lab results, Myles was sent to Lucile Packard Children's Hospital in Palo Alto, California, and the painful process of dialysis started. He needed a kidney and he needed it now. We soon realized that Myles' second chance at life would come from my wife or from me. It's strange, but prior to our arrival at the transplant center, Ginger and I had not discussed which of us would donate a kidney. The decision became clear when I remembered watching her deliver our two sons. I knew it was my turn to give Myles life.
And then it happened ... Myles and I were given a transplant date of December 8, 2003. It was not until three days before the transplant that I was officially designated as the donor. I was frightened. My fear was soon replaced by the hope that Myles was going to live.
We traveled to Lucile Packard. I checked in to the hospital first and was given a room in the adult wing. Myles went to a room in the pediatric transplant area. It was immediately clear that Myles definitely got the better end of this deal. His room was loaded with video games and movies, and was much larger than mine. Not to mention that his room is where family members, grandparents and friends gathered. My final recollection before transplant was saying goodbye to Ginger and being wheeled down a hallway.
I woke to someone asking, "Mr. Nesbitt, you are in recovery, how do you feel?" I am not sure how I responded, but I know I didn't feel great. I was transferred back to my room and as the elevator door opened to the floor I heard Tucker say "Dad." He walked by my side as I was returned to my room. From that point until later that evening he did not leave me.
Myles came out of surgery later that evening and he spent several days afterwards in the pediatric ICU, recovering physically and mentally. I spent the next day and a half pressing the "magic button" at the side of my bed that delivered medication to relieve the pain. I finally made it to Myles' room and was blown away by all the medical tubes, machines and wiring. I did not speak at first, but reached over and touched his fingers. I was shocked by what I felt. His hands were so soft and warm...they were healthy. Myles looked over at me and he could tell how excited I was.
It was only then that I realized my kidney - one of my organs - was working inside of Myles and was going to keep him alive for a very long time.
After five days, I was released and sent home to recover. Myles continued his hospital stay for two more weeks and was released several days before Christmas. We had the perfect holiday blessing - all of us at home together...and healthy.
Our official introduction to the Children's Organ Transplant Association came in January 2004. Our friends kept asking about ways to help; and this amazing organization helped transform their desire to help into a full-blown campaign designed to raise money for transplant-related expenses.
Our life continues to be blessed today. Myles is about to finish sixth grade and is ready to head to junior high this fall. Staying on track with his education is a tribute to his mother's dedication and to his desire to keep up with other kids. He plays drums in band, rides his skateboard, plays with his dog and does "normal boy stuff."
Many years ago, I never thought any of this would be possible.
Father's Day is special for me. I am thrilled to have two wonderful sons who love me and challenge me and sometimes push me to my limits. But unlike lots of other dads, one of my sons is alive today because I was able to give him the gift of life. I cannot explain how that makes me feel on Father's Day or on 'Transplant Day' that we celebrate each December eighth. I do know that Myles and I will always share a very special connection - a connection that I will always celebrate.
Editor's Note: Phillip Nesbitt and his family are residents of Fremont, CA
The Children's Organ Transplant Association (COTA) is a national charity based in Bloomington, Indiana. COTA organizes and guides communities in raising funds for transplant-needy patients; 100% of all funds raised are used for transplant-related expenses.
Children's Organ Transplant Association