BALTIMORE — "Watching them put the tube in her mouth, down her nose, it was real hard for me,” said Shanell Hunt.
Shanell Hunt and Dawaun Murdock have been in and out of the hospital since their baby girl was born. 8-month-year-old Desire is in liver failure.
“I’m there but it’s like I’m running away from the pain. Every time I look at her, I’m like, oh my God my baby is being tortured, she has all these tubes in her,” said Murdock.
Despite a full workup and multiple tests, Desire's doctors haven't been able to pin point the exact disorder.
"Desire presented to us with jaundice and the type of jaundice she has is called cholestasis. She has a live condition where her body does not release bile from the liver and so that’s toxic to the liver,” said Sara Kathryn Smith, Medical Director of Pediatric Liver Transplantation at Johns
Her doctors say if she doesn't receive a transplant in the next few months, Desire will likely die. Her parents are hoping for a living donor, for someone to give just a piece of their liver to Desire.
"The liver that is left in the donor grows back within a few months. A piece of liver that with put into Desire grows into the correct size liver and grows with her as she’s grows up,” said Dr. Smith.
According to the United Network for Organ Sharing, around 400 children in the U.S. are waiting for a liver transplant. Shanell says while Desire is towards the top of the list, the wait for a perfect match has been taxing, financially and emotionally for the entire family.
"I want to be home with my kids, I want to cook for my kids. You are always on someone else's time. They want to be home with their mom,” said Hunt.
"I'm tired of seeing my baby suffer. I wish I could lay down and take her place,” said Murdock.
Their hope is by next Christmas, everyone will be home for the holidays.
"I want her to be a regular child, travel, get a job, get married, have kids. I want to see her grow older than her grandma,” said Hunt.
For more information on becoming a potential donor, you call Johns Hopkins Liver Transplant Office at (410)-614-2989.
