A Life without Eating
Imagine sitting down at the dinner table and not being able to eat anything on your plate. For Matisse Reid, eating is something she has been unable to enjoy for nearly 10 years. Born with a rare medical condition called chronic idiopathic intestinal pseudo obstruction, Matisse has been fed intravenously her entire life.
“It’s a hard thing to tell your child she’s not allowed to eat anything on her plate and to try to keep her life as normal as possible,” says Wayne, Matisse’s father.
This bubbly and outgoing 10-year-old has had a fascination with food for as long as her parents can remember, but unfortunately her body simply would not allow her to digest it.
“If she ate half a teaspoon of rice, it would make her stomach really, really sore,” says Matisse’s mother, Jodee.
As a result, Matisse often suffered from recurrent and excruciating abdominal pain, pronounced abdominal distension, and vomiting. Even medication failed to control this overwhelming pain. As a baby, she endured multiple abdominal surgeries and spent most of her life in and out of the hospital. As Matisse grew and intestinal transplantation progressed, Jodee and Wayne realized maybe they could get Matisse the life-saving transplant she needed.
“My wife spent two years researching all the centers that did bowel transplants around the world. It kept coming back to the same thing. Children’s Hospital was the place where we needed to go,” says Wayne.
Wayne and Jodee decided to move their family from their home in New Zealand halfway across the world to Pittsburgh in hopes that Matisse would receive the transplant she needed to survive. With more than 20 years of experience in intestinal transplantation and outcomes that are among the highest in the world, Wayne and Jodee were confident Children’s Hospital of Pittsburgh of UPMC was the best place for their daughter.
In January 2007, after years of fundraising and planning, the family of six finally boarded an airplane in New Zealand destined for Pittsburgh. Days after their arrival, Matisse endured four days of testing at Children’s Hospital and was placed on the national transplant waiting list.
As Jodee and Wayne settled their four children into a local hotel and began searching for a more permanent home, the reality set in – maybe they could finally have their little girl back. Maybe she would be able to enjoy life as a “normal” child – one who could have sleepovers, take swim lessons, go to school, and most importantly, experience life without pain.
“The main indications for considering intestinal transplant for Matisse were the loss of her access, meaning she had clotted some of the veins that were her lifelines for nutritional therapy and she had early signs of liver injury that would proceed if she was unable to come off of her total parenteral nutrition (TPN),” says George Mazariegos, MD, director, Hillman Center for Pediatric Transplantation.
TPN is a way of supplying all the nutritional needs of the body by bypassing the digestive system and dripping nutrient solution directly into a vein. It is primarily used when children are unable to get their nutrition through eating and for Matisse, it became her lifeline.
Matisse returned to Children’s regularly for treatment and care as she anxiously waited for the phone call that would bring good news of donor organs being available. While Matisse continued to experience these often severe episodes of overwhelming pain, her parents were confident Children’s transplant team was best able to provide the most comprehensive care in managing her symptoms.
“The team here at Children’s is very good at making sure the family is a part of the entire process. The whole team has been very supportive and they’ve made every effort to ensure we’re part of the treatment plan, recovery, and decision making process,” says Jodee.
A Long Awaited Phone Call
On December 7, 2010, Matisse and her family finally received the news they had been desperately waiting for – Children’s physicians had donor organs for Matisse. Enduring a twelve hour transplant operation, Matisse received a small and large bowel. Despite experiencing some challenges following her transplant, Matisse was able to return home almost six weeks following her surgery.
“The idea is to get the perfect organs for her. The wait was definitely worth it. When the call finally came, she was very well looked after and was in great hands with the surgeons at Children’s,” says Jodee.
According to Dr. Mazariegos, one of the benefits of transplant is an incredibly improved quality of life. Matisse and her family are now able to return to a routine that is much improved compared to what they were living with before Matisse’s transplant. Physicians are hopeful Matisse will enjoy a life of minimal medications and care compared to the constant and unpredictable medical care she was requiring beforehand.
On the Road to Recovery
Since her transplant, Matisse is thriving and has taken to the kitchen slicing, dicing, baking, and frying anything she can get her hands on. A Food Network fanatic, Matisse says she has learned from the best including Rachel Ray, Paula Dean, and even Bobby Flay. This bona fide kitchen whiz is confident that she will one day host her own cooking show. Until then, she enjoys spending time with her brothers and sister and has been able to return to school where her classmates have welcomed her with open arms.
“Matisse’s quality of life began when she came to Pittsburgh and a future was made possible for her thanks to the transplant team at Children’s Hospital. Continued research, state-of-the-art medical equipment, and family and community support is all needed to make sure children like Matisse have the best chance possible. We put our complete faith and child’s life in the hands of the team at Children’s and would encourage others to support this wonderful asset to families of Pittsburgh,” says Jodee.
To learn more about Matisse, watch her video!