When Hailey’s daughter was born, Hailey instantly became a caregiver. Upon her daughter’s birth, doctors had to remove about 98 percent of her intestines, and only gave her a few weeks to live. They did not explore any options on how to help her. Hailey and her husband refused to give up, and an internet search revealed a hospital close by that would be able to perform an intestine transplant. Over a period of four months, they transitioned her to the new hospital to see if this was an option that could save their daughter.
Hailey and her family lived in New York, and the hospital that was ultimately able to get their daughter a transplant was in Pittsburgh. Hailey quite her job and moved to Pittsburgh to get her daughter treatment while her husband stayed behind, continuing to work in New York. Hailey felt that the transplant became her entire life. She felt extremely isolated, had no one to talk to, and did not feel supported by the healthcare team.
To be able to care for her daughter, Hailey took meticulous notes on everything the healthcare team told her. She essentially had to become a nurse herself, learning medical jargon and keeping a binder full of information she had gathered. She was not told how to deal with a stoma bag— instead, she learned tips and tricks from other moms on the floor. At the time, intestinal transplant was still new, and Hailey’s daughter was on multiple medications that were too much to handle. Hailey very carefully learned which ones were essential and which ones she could wean her daughter from.
Post-transplant, Hailey was able to bring her daughter back home. She realizes their family was extremely lucky to be able to afford to leave and live in another city for a short amount of time, and that a lot of people who need a transplant would not be able to financially support themselves through that necessity. Hailey’s family was able to fund another family’s relocation to get the transplant they needed, and she believes there should be funding in place so the need to move isn’t a roadblock to anyone who needs a transplant.
Hailey faced several barriers of her own post-transplant. Once after a hospital stay, her daughter, who was still a baby, developed a hole in her head. The hospital would not treat her, and Hailey had to learn how to care for and treat her daughter in this instance by herself. When her daughter grew older, Hailey had to fight and even hire an attorney to get her the accommodations she needed in school.
Hailey was never connected to a social worker even though she had asked. Although Hailey and her husband remain in touch with their daughter’s healthcare team, it is Hailey doing the reaching out if she needs it. Hailey’s daughter is very involved in the transplant space and is friends with those who are on her team.
To support transplant caregivers, there needs to be better education on what transplant options are and what financial support can be provided. If Hailey and her husband hadn’t discovered transplant was a possibility, their daughter would have died. It would also be useful to have an open forum where caregivers could share the tricks, tips, and information they’ve learned, or a universal app that automatically updates with transplant information from hospitals and doctors. Social workers at transplant centers should be available as a point person for caregivers to connect with the hospital and to get medical information.