GILLIAN’S TRANSPLANT STORY

Gillian with Drs. Emre, Shneider and Kerkar, post-transplant

You wouldn’t expect it from a child who has endured as much as she, but Gillian is a wonderful, energetic and friendly 8 year old who just happens to have recently undergone a liver transplant at Mt. Sinai. To look at her now, you would never know that just a short time ago, she was diagnosed with hepatocelluar carcinoma, a rare liver tumor, hastening the need for her transplant. Although we knew since she was seven weeks of age, when she was diagnosed with Biliary Atresia, that some day our daughter would require a liver transplant, we had hoped that it would be far off in the future. She was our miracle child, she was going to beat the odds–she had so far. So when we were told that Gillian needed a liver transplant ASAP, our world turned upside down. Until then, Gillian had been doing relatively well with her liver disease taking a back seat to some other health issues. The only visible signs of her disease were a scar across her big belly from

Gillian with Katie Holmes a few days post-transplant

her Kasai procedure; a slightly jaundiced appearance; and, the frequent itching that often woke her up at night and distracted her from school work. In all other respects, Gillian was a regular kid; she let nothing stop her. The news of the tumor and eminent need of a transplant came as complete surprises.

After the initial shock wore off and the reality of the situation sank in, we dealt with Gillian’s new status just as we had with all her other medical issues–one step at a time. Everything was explained to us and then to Gillian–she knew that soon she was going to get a new liver and the ways it could happen. Gillian wasn’t scared; rather,

Gillian and friends celebrating her 8th birthday 5 months post-transplant

she was looking forward to being able to do things that with Biliary Atresia she was not allowed to do. As always, Gillian looked at the bright side of things. Gillian completed the necessary pre-transplant testing and I underwent testing to be her living donor should an organ not become available in time. With all our testing completed and her being listed as a Status 1 on the transplant list, all we could do was pack our bags and wait. Wait for either the call that a liver had become available or the end of the mandatory cooling off period so that the living donor surgery could be scheduled. Although we tried to go about our lives as normal as possible, it wasn’t always easy. Gillian had to say goodbye to her class at school knowing that she would not be returning to complete second grade with them. The risk of infection was too great and we could not take that chance given that she would be undergoing the transplant within a relatively short time.

Gillian at the beach, summer 2005

Sixteen days after being listed, Gillian received the phone call we had been waiting for–a liver was available. After all the waiting, everything now seemed to be happening so fast. Within ten minutes of the call, we were on our way to Mt. Sinai. Gillian underwent surgery early the next morning. Although we had done it numerous times before, it’s never easy leaving your child in an operating room, kissing them goodbye...however, we took comfort in the fact that Gillian was with Dr. Emre. When he came to us in the waiting room seven hours later to let us know that things were going well and that Gillian was fortunate enough to have received an entire adult liver, we were overjoyed and relieved. Although there were several more hours of surgery to go, a big, dark cloud had been lifted.

We will never forget seeing Gillian for the first time after surgery. Never before had we seen her with white skin or eyes. She was beautiful! We knew that things were going to be alright when just moments after getting into her room, Gillian signaled that she wanted the breathing tube out, and only two days later, spent hours sitting up in a chair playing video games. Gillian spent a total of ten days in Mt. Sinai where an amazing staff of doctors, nurses, transplant coordinators and child life specialists took care of her and

Gillian pumpkin picking, 6 months post-transplant

educated us on what to do and expect with an immunosuppressed child. Gillian’s experience at Mt. Sinai was a positive one. If you ask her about having a liver transplant, Gillian will tell you that “it didn’t hurt at all–I was asleep!” With pride she still continues to show-off her liver transplant photo album that she put together with the aid of child life specialists. When it was time for Gillian to leave the hospital, we too felt confident that we were sufficiently educated in how to deal with her immunosuppression.

Gillian is now almost nine months post-liver transplant and is doing as well as, if not better than expected. Although we take reasonable precautions because of her being immunosuppressed, Gillian doesn’t live in a bubble. She has resumed all her activities and then some including ice skating, an activity that she was not permitted to participate in prior to her transplant. Even though she needs to have frequent blood tests and to take Prograf twice daily, she never complains. Gillian seems to know what a gift she has been given and lives her life to the fullest everyday. We continuously look at her in awe and amazement. Like a badge of courage, she wears her scar. There are no words to express how truly grateful we are to the donor and donor’s family for a most generous gift, to our family and friends for their unending support, and to Dr. Emre and his staff for giving our daughter a chance to grow up.

Pam, Gary and Gillian Cohen