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The International Association for Organ Donation

313-745-2235

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My husband and I are writing this letter as a plea for help to raise awareness for organ donation for infants and children.

My five month old baby girl, Taylor Ziemba, has an extremely rare disorder called Microvillous Inclusion Disease (MVID). There are only about 50 documented cases of this disease worldwide. This disorder affects my daughter’s ability to absorb nutrients in her small intestine. She is unable to get her nutrition orally. Her only chance to survive is to have a small intestine transplant.

Presently, Taylor receives nutrients intravenously through a Broviac catheter in her chest. Her nutrition is called TPN or total parental nutrition. Taylor cannot live on the TPN indefinitely because it is damaging her liver. Her liver is failing, which has prompted her to be listed for a combined liver-small intestine transplant. Most children can only live with liver failure for approximately six months to a year.

Our family lives in Jackson, Michigan. Taylor is followed by pediatric gastroenterology at C.S. Mott Children’s Hospital at the University of Michigan. Mott does not perform small intestine transplants. There are only three major centers in the United States that perform small intestine transplants regularly. Taylor has been listed at the Thomas E. Starzl Transplantation Institute at the Children’s Hospital of Pittsburgh.

Small intestine transplants are the newest and rarest type of transplant. Since 1986, 989 transplants in 923 patients have been performed. To compare, 12,000 kidney transplants were performed in 2002, alone. Overall, the small intestine survival rate is 50 % with 484 of the 923 patients surviving. Great advances have been made in the past several years with this procedure. The 3 year survival rate now is 70% with improvements in technique and anti-rejection protocols.

Taylor may have a wait of 6 to 18 months to get her transplant. It’s very difficult to get donor organs for a baby her size. According to Children’s Hospital of Pittsburgh, 50% of the children listed die waiting for a transplant. We are desperately trying to save Taylor’s life. We want to make people aware that there is a need for organs from children. We know that it is a difficult and heartwrenching decision for a parent facing a tragedy to make. If people were educated about organ donation, they would know what decision they would make if they were ever in that situation. This is an extremely sensitive issue, and we know what it is to experience the horrible grief of losing a baby. We have lost two other infants to unrelated medical complications.

I have had many difficulties trying to have children. All of my pregnancies were followed by the maternal-fetal medicine team at the University of Michigan Women’s Hospital. My first pregnancy ended in miscarriage. My second and third pregnancies were complicated by placental insufficiency. In 1999, my daughter Brooke, was born 11 weeks premature with severe intrauterine growth restriction(IUGR), weighing 1lb 4 oz, due to the placental insufficiency. After enduring a difficult month in the NICU, Brooke passed away after complications from surgery for a bowel obstruction. When Brooke passed away, we had asked if we could donate her organs, but she was too small and her organs too immature to be used.

I delivered twins 10 weeks premature in 2000. My son Brett had severe IUGR, weighing lb 7 oz. My daughter, Hillary, was unaffected by the placental insufficiency and was normal size for gestational age, 2 lb 14 oz. Brett died in the NICU at 2 weeks of age. Hillary is now a healthy 3 year old. Her only complication of prematurely was retinopathy. She had surgery on her eyes and now wears glasses.

It was very difficult for us to decide to try again for another baby. We sought the advice of experts before doing so. We knew there was a chance that I could develop placental insufficiency again, but there was just as good a chance that I could have another healthy baby like Hillary. My pregnancy with Taylor was uncomplicated. Taylor’s condition is not associated with the problems my 2 other babies had. Taylor was born at 37 weeks, weighing 6lb 8 oz. She initially went home from the hospital two days after birth. She returned 1 week later for excessive stooling and dehydration. It was 8 weeks before we knew her diagnosis.

Taylor Danielle is a happy, beautiful baby girl that is so loved by everyone that knows her. She coos and smiles, laughs out loud, and does everything like all other babies her age. She just cannot eat like other babies. We so desperately want to give Taylor a chance at life. If she gets her transplant, there is a good chance she will live a normal life. Please help us by helping inform others about the need for organ donation. It is our hope that the awareness could impact many other families, saving other children in need of donor organs, just like Taylor.

With Sincere Thanks,

Renee and Steve Ziemba, Taylor’s parents.

TO FIND OUT HOW YOU CAN HELP, FEEL FREE TO CONTACT THE IAOD AT 313-745-2235.

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