Baby Nylah's Liver Transplant

My name is Sarah Barrett. My beautiful, 6-month-old baby girl is in end-stage liver failure and her only hope is a new liver. This fundraiser is to help with expenses related to her Kasai surgery, liver transplant, months in the hospital and PICU, exams, treatments, medications to keep her alive before the transplant, and other medications that she must take forever to prevent rejection of the new organ.

When I first held my sweet baby girl in my hands, I had no idea that the most devastating heartbreak was looming upon us. When my daughter, Jen’nylah, was only a few weeks old she was rushed to the hospital due to extreme jaundice. We soon learned that she was born with biliary atresia, a rare disease that occurs when a baby’s bile ducts become blocked and the liver literally poisons itself. In Jen’nylah’s case, the bile ducts that are supposed to carry bile from the liver to the small intestine never actually formed. To prevent liver failure, surgeons performed Kasai surgery at 4 months old to try to build new ducts that would allow bile to drain out of the liver. Unfortunately, the surgery was unsuccessful. Her liver is so damaged that her only option now is a liver transplant. My baby is currently in the PICU, fighting infection after infection, in excruciating pain, and on a transplant list for a new liver. Jen’nylah cannot leave the hospital until she gets a new liver and she does not have much time left.

Jen’nylah is as sweet as they come. She is a happy baby and on a good day, she might even smile at me when I talk to her. But her big, innocent blue eyes tell me she’s in pain and she whimpers and cries out when I touch her. Nothing about this is what I imagined that motherhood would be. My heart breaks every single day. All I can do now is pray that God will get us through this.

The hospital is not close to home and I cannot leave my little girl so we are currently living in the hospital. As such, it has become exceedingly difficult for Jen’nylah's father and I to financially provide for our family. Jen’nylah’s father is working two jobs to support our family, and until today, I was working full time from a hospital bed while taking care of my daughter at the hospital. However, my employer fired me this morning after over four years of rarely missing any work, taking extra shifts and even working holidays. Without the income from my job, there is simply no way that we can provide even the basic necessities for our little girl.

We are so grateful for the heartfelt messages, prayers, and gifts received to date. It is a wonderful feeling to know that there are people all across this country sending love and prayers. We would appreciate any help as we have a long journey ahead. We are hopeful and forever grateful for any contribution you can make. Thank you!