Editor’s Note: Caring for a child who has received an organ transplant is both a tremendous challenge and a tremendous blessing. The Westman family has faced these experiences tenfold, since they have adopted or fostered 10 transplant children! Here are the stories of their three adopted children, Shante, Tori and Jay.
Shante weighed 3 pounds 12 ounces when she was born. For some reason, within 8 hours her intestines nearly all died (it is called necrotizing enterocolitis) and she lost most of her intestines. Since she did not have enough intestines to support her life, she was put on TPN (total parenteral nutrition). TPN, while it can keep you alive, is very hard on the liver. When she was a year old she was placed on the transplant list at the University of Nebraska Medical Center. When she was 2 ½ she received her first isolated bowel transplant. She rejected that intestine and it was removed 6 months to the day after it was put in. She spent that whole summer in the ICU. Back on TPN, she was relisted and had another isolated bowel transplant when she was 4. She enjoyed a pretty normal life for 22 months. She had probably been suffering from chronic rejection for months and got a virus which put her over the edge, and she lost the second organ. The 22 months had given her liver time to recover and she managed to last about 6 years before her health deteriorated and when she was 12 she had her third transplant. This time she got the liver, bowel, pancreas and two kidneys.
Since that transplant her life has been great! She is now 16. She goes to school full time (she missed A LOT of school time!) She has friends. She has a boyfriend. When you ask how school went today she almost always says “We laughed a lot today!” She hopes to marry someday and have 5 children. She has lots of names chosen already. The thing that is most important is she is HAPPY!
Tori was an even smaller baby. She was about a pound and a half and was born when her mother was about 26 weeks pregnant. When she was just a few weeks old she lost her intestines to infection. Everyone was certain that Tori would die, but she proved them all wrong. She came to Omaha from Texas a week before her first birthday. Until a week after her birthday, she had only been out of the hospital for 4 days. She was 15 months old when she got her transplant. She couldn’t sit at all. She needed to lie flat all the time. In the weeks before her transplant she was hospitalized in the ICU because her liver was failing and she needed 3 transfusions a week. She was probably within a few weeks of dying. She was so yellow! By the time she came back from surgery she was already looking better. Her urine had been a dark orange and when they brought her back up to the ICU her urine was clear! The first few weeks were really tough, because she had been so very sick.
But now…Miss Tori is the picture of health. She is 8 years old. She goes to school full time. She loves to play on the computer. She is smart, and stubborn and really enjoys her life. Just this morning she did something silly and told me “She (meaning herself) is so crazy!”
Jay was born in Denver. He had a defect in his abdominal wall called gastroschisis. A good deal of his intestines were outside of his body. He had surgery and also became TPN dependant. He quickly developed liver damage and required a liver transplant. He was about 10 months old when he got his transplant. He had enough intestines left that he was able to get off of TPN.
To look at Jay you would never guess that he ever had anything wrong. He runs and plays like any other 5-year-old boy. He is in kindergarten and just loves going to school. He is learning to read and is very good with numbers. Mostly…he is ALL boy!
A Message from Mom, Cathy Westman
None of our children would be alive had not they had the chance for a transplant. All of the organs came from a child the same size or smaller than our kids were when they got their transplants. We are so aware of the level of grief that those families were enduring, and yet they had the strength to think of helping another child, one that they did not know. I hope that all donor families know how much we appreciate them.