This letter is from Mabel Burkholder from PA, mother of 3 MSUD children. Kathryn is 16 years old and free of MSUD symptoms after a liver transplant 8 years ago. Her other children with MSUD are Ellamae, age 12, and Norman JR, age 7. They follow the traditional treatment of MSUD. Because of her situation, Mabel has a unique perspective on treatment of MSUD via liver transplantation and traditional treatment.
(See MSUD Newsletter Vol. 16, No. 1 Spring/Summer 1998 for more details of Kathryn's liver transplant)
Eight years ago at the age of 8, our daughter Kathryn was in liver failure from Vitamin A toxicity. She needed a liver transplant to survive. Dr. Morton said that it might affect the future of MSUD treatment if we allowed the transplant. We decided to go through with the transplant. We want others to benefit from what was learned by Kathryn's transplant.
Kathryn was in the hospital for the first 3 months after the transplant. The next 6 months were difficult also. Since that time, Kathryn has been fairly healthy and without too many transplant -related problems... Eventually, we were glad that we went through with the transplant. Dr Morton's theory proved correct and Kathryn's MSUD was cured by the liver transplant.
Recently, Kathryn was hospitalized in Pittsburgh for a rejection episode. This was scary for us. The doctors were concerned that she was not taking all of her Prograf (antirejection medication). Kathryn is mostly compliant with her medication and had only missed two doses before the hospitalization.
We'd been thinking about having our other MSUD children transplanted, but will move slowly with that decision, since Kathryn's recent hospitalization. Ellamae is not interested in a liver transplant at this time. Norman JR would like to have a transplant, because he wants to eat meat and eggs. We'll wait awhile to decide about transplanting the other children. In the meantime, I'll pray for strength for those that decide to go through with the transplant.
Note: Following a liver transplant for MSUD, children and adults with MSUD no longer have to follow a diet or drink formula. The disease, however, can still be passed onto their children.
Kathryn Burkholder: First MSUD Liver Transplantee
- Written by Mabel Burkholder