Family’s Journey Through Rare Disease Leads to Lifesaving Transplant

A family’s life changed dramatically when their newborn daughter, Teighan Rae Whitfield, was diagnosed with a rare, life-threatening condition known as biliary atresia. Initially born at Whiston Hospital in September 2017, Teighan’s jaundice seemed typical; her parents, Scott and Danielle Whitfield, were reassured by their previous experience with their son, Alfie, who had also experienced jaundice as an infant. However, after two weeks, Teighan’s jaundice returned, accompanied by concerning symptoms such as grey and chalky stools.

After being admitted to the hospital for further evaluation, Teighan underwent blood tests and scans, leading to a referral to Leeds Children’s Hospital. At just six weeks old, she received the diagnosis of biliary atresia, a serious liver disease that affects infants when the bile ducts are blocked or absent. Within a few days of the diagnosis, Teighan underwent an urgent procedure known as The Kasai procedure to delay liver failure. Following the surgery, she required lifelong medication and frequent check-ups at various hospitals, including Alder Hey and Whiston Hospital.

In early 2023, signs of distress appeared again. Teighan’s condition worsened as her stomach enlarged and her skin began to yellow. During a routine check-up in March 2023, doctors discovered three nodules on her liver, prompting the need for a liver transplant due to the potential risk of cancer. Following a transplant assessment, she was placed on the organ donation register in August 2023.

Danielle expressed the emotional turmoil the family faced during this time, stating, “It seemed to go from 0 to 100 in a few months. We could see she was not herself anymore, and all our family were heartbroken seeing her become unwell so quickly.” The family experienced the anxiety of two false alarm calls about potential transplants, which strained their emotional well-being.

On the evening of February 2024, Teighan received the call that a transplant was available. The family rushed to Leeds, where she successfully underwent the transplant surgery. Unfortunately, her recovery was complicated by infections, including chicken pox and adenovirus, requiring a six-week hospital stay.

Now aged eight, Teighan recently celebrated her “liverversary,” a term her family coined to mark the anniversary of her transplant. To commemorate the occasion, they have planned a trip to Disneyland Paris, a journey that had been postponed due to her health complications. Danielle remarked, “With each milestone Teighan reaches, we are forever grateful to her donor.”

The Whitfield family remains in touch with the family of Teighan’s donor, Lee Armstrong, and they share updates about Teighan’s progress. Danielle highlighted the bond they’ve formed, stating, “They have become part of our family, and when the time is right, we are going to finally meet up with them.”

Teighan has also been actively raising funds for various charities since her transplant and was awarded a Child of Courage Award at the annual Pride of St Helens Awards. She participated in her first British Transplant Games in Oxford last year and plans to compete again this year in Sheffield alongside over 40 other children who have received organ transplants. To support her participation, Teighan has initiated a sponsored hike up Rivington Pike during the Easter half-term, and a GoFundMe page has been established to assist with costs.

Danielle concluded, “It’s brilliant seeing her happy and wanting to give back to everyone who has helped her. We’re going to be there to encourage her, and if we have to carry her, we’ll all carry her.” The Whitfield family’s journey highlights the resilience of a young girl and the profound impact of organ donation on the lives of both recipients and their families.