Experience Journal: Transplant, the gift of life

experience-journal-miracles-imageWhen a vital organ is damaged beyond repair, the only path to health is transplantation — replacing the dysfunctional organ with an organ from the body of a donor. The experience can be physically, psychologically and emotionally trying for patients and families, especially when the patient is a child or teen.

Experience Journal, a project of the Boston Children’s Hospital psychiatry program, interviewed numerous children, teens, young adults and parents about their experience through the transplant journey — from accepting their diagnoses to waiting for the donor organ to connecting with the donor’s family.

This letter was written on Christmas Eve by the mother of a transplant patient to the family that donated a kidney to her son:

Hello,

This is the first Christmas greeting I am sending. It is also the most important note I will ever send. I guess the thing that makes this so strange is that you are someone who I may never know.

I am Chris’s mom, and am writing on his behalf. He has been a patient in the hospital for almost two weeks now. He was pretty sick at first and spent almost a week in the intensive care unit. The Chris who was admitted to the hospital is not the same Chris who now rests in his hospital bed near me. That Chris was a little skinny and he got tired pretty easily. He didn’t sleep very well and had to work pretty hard to keep up with his buddies. He seemed confused a lot of the time, and no matter how much he brushed his teeth he still had pretty bad breath.

Chris had learned his way around a few too many hospitals. He knows medical terms I am sure he will never be able to spell. He’s spent a lot of time in operating rooms, taking medicines and being hooked up to all sorts of machines. He knows more about sickness and disease than most of us ever will. And he’s only 10 years old.

The child who now reclines beside me woke me up at 6:30 yesterday morning, eager to get on with the day. Later he read to me with an excitement and passion in his voice that I hadn’t heard for years. It’s wonderful to have him back.

He’s still pretty sick, but now it’s from the surgery and the new medicines rather than from the kidney disease that has plagued him for his entire life. He gets better and stronger every day. We are truly living a holiday miracle.

I wish I could explain the pain with which I have lived because I didn’t give birth to a “perfect” child. For years I have known that although I am healthy, I am the wrong blood type to be able to donate a kidney to Chris.

There is no way that I can ever thank you enough for the gift you have given to my child. It will always bother me very deeply that my joy had to come embraced in your loss, especially because it is the holiday season. This is the season of miracles and you have helped to bring about a miracle in our lives.

Chris is a wonderful, loving, cheerful, musical child and I thank you from the bottom of my heart for giving him back to me.

One year later, the mother wrote another letter to the same donor family:

Dear Friend,

It is often difficult to explain how it feels to live a commonplace existence in the wake of a miracle. That is what our life has become, commonplace. Maybe it is the fact that we waited so hopefully for the three years that proved to be an eternity — I just don’t know. As we come close to the anniversary of your gift, I am often amazed at how unaware I was of how quickly our lives would change. We have begun our holiday rituals.

This year, once again, the children danced in our local production of Nutcracker, but this time Chris was unhindered by the impediments of dialysis and frequent medication rituals. There was a lightness in the air — an almost giddy freedom that came with knowing that all we needed were gray slippers (he was a mouse) and a few pills for six o’clock. It was a wonderful performance, and the entire company joined in our delight seeing the contrast to the bad old days when Chris couldn’t dance because he was too tired from the endless hemodialysis and too sick from the infection.

In his health and vibrancy, I am constantly reminded of the gift that you and your family have given to us.

I wanted to share with you a wonderful revelation I came to recently.

I think the miracle of transplantation is so very special, because it represents the best things that mankind is capable of. We live in a world of technology and science; the quality of the medical technology that makes transplantation possible is unequalled in the world. But for all its efficiency, transplantation cannot even begin unless someone like you, in the midst of the worst crisis of your life, is able to hold on to a shred of faith in the wisdom of the creator and the ultimate goodness of mankind. Your faith in mankind has been well placed. You have given my son a second chance and restored my faith in this strange process we call existence. I can only hope that the wonder of my son’s new life might provide you with some solace at this sacred time of year.

Hear more about transplant from our patients and families in the Experience Journal.