Shirleyanns 2nd Heart Transplant Journey ❤️

Shirleyann Ruth is a 12 year old cutie awaiting her 2nd heart transplant and currently inpatient at Seattle Childrens Hospital, indefinitely. She had her first heart surgery at 8 days old at Doernbecher (OHSU) after she was diagnosed with hypoplastic left heart syndrome at 31 hours old.

She had her first heart transplant at 1 years old, and unfortunately that heart is failing and she’s been back on the transplant list for 1,543 days. In Sept 2018 they discovered she has coronary artery disease and the only cure for this condition is a new heart. Her stamina continues to decline and she spends much of her time in bed or laying low.

Over the last almost 3 years, she has had one call for a heart that wasn’t good enough, and there have been no other strong enough matches for acceptance. Her case is very complicated and that has prevented her from being able to accept a heart. In June of 2022, she was admitted to the hospital where she stayed for 5 months while they started her on aggressive treatments to treat the antibodies that she has that have prevented her from accepting a heart. She came home November 2022 because being away from family and friends for that long was starting to weigh on her mental health. She continued treatments in Seattle once a week until February and then every 2 weeks until May 2023.

She stopped the treatments in May because the antibodies were not decreasing anymore and her heart function had decreased which meant that her kidneys slowed down and she was not able to process that extra fluid from the medications properly. At the end of July 2023, during a routine echocardiogram, the doctors found that her heart function had decreased again and they decided to do a biopsy to get a better picture of what was going on. During that biopsy, they discovered that this decrease in function was a true decline of her condition. Unfortunately, Shirleyann is running out of time. We have decided to put her in the hospital again starting Tuesday August 22nd, 2023 because we are too far from Seattle Childrens and if she experienced a cardiac event, we wouldn’t be able to get her to the hospital fast enough, and she will be listed at the highest status, and so we can meet with the palliative care team. This team will help us make difficult healthcare decisions for Shirleyann and what may be coming for her.

Her aunt lives at the hospital full time with her, while her mom works full time to support the family (herself and 2 older sisters) back in South Bend, WA. She’s running out of time waiting for her new heart as she’s experiencing multiple problems with her kidneys, digestion, liver and other health systems failure, but she has a GREAT ATTITUDE and is in good spirits.

Can you help support this sweet little girl and her amazing family as they endure this challenge? Driving back and fourth from hospital to home and supporting 2 families separately is proving to be very challenging during this time!

Thank you for your support.