A Pennsylvania child in need of a heart transplant is fighting in federal court to be placed higher on the recipient list, arguing its ranking system should be determined by priority.
Instead, the lawsuit filed May 1 against the U.S. Department of Health and Human Services says, the Status 1A list ranks patients by how much time they’ve spent in a hospital, leaving the plaintiffs’ daughter waiting while bleeding in her airway recurs. The 7-year-old girl is battling end-stage heart disease and renal failure and needs a transplanted heart and kidney.
“On February 19, 2026, her doctors told her parents she should be taken home for palliative care and hospice (i.e., to die),” the suit says.
“But then she recovered and is now stable. However, the underlying condition that caused bleeding in her airway (a leaky, defective heart) is unchanged. Until she gets a transplant, she will be at risk of bleeding in her airway, which is likely to cause her death, as it almost did twice already this year.”
Under the National Organ Transplant Act, the federal Organ Procurement and Transplantation Network must issue priority rankings for waiting lists that order patients “from most to least medically urgent.”
The girl’s classification as Status 1A is the highest priority, but her parents last year decided against having her hospitalized to instead care for her at home, which they have been doing since 2021. It wasn’t until Jan. 7, 2026, that she began to accrue hospital time, but at one point she was too sick to receive a transplant and was taken off the Status 1A list for a period of time.
Other pediatric patients ahead of her on the list are possibly less in need of a heart now, the suit says, and can use a Ventricular Assist Device to live. Child Doe, as she’s called in the complaint, can’t use a VAD.
“As sympathetic as Child Doe’s parents are for the needs of all patients, they recognize that under the NOTA and the Final Rule Child Doe has a right to be treated fairly in organ allocation, meaning specifically that she is required to wait in line for an organ but the line must be based on medical urgency; right now the line is not based on medical urgency,” the suit says.
“Stated in constitutional terms, Child Doe is at great risk of being deprived of her life while the federal system fails to follow the process mandated by the statute and regulations. If Child Doe dies, that will represent a deprivation of life without due process of law having been followed.”
The suit calls on DHHS Secretary Robert F. Kennedy, Jr. to “prevent malfunctioning” of the organ transplant system. Child Doe’s parents wrote letters to authorities in the days leading to the lawsuit.
On May 1, the Health Resources and Services Administration asked OPTN to answer questions posed by the plaintiffs’ request. It gave OPTN until May 22, but Child Doe’s parents say it does not address the potential for a life-threatening emergency happening before then.
Stephen Harvey of Steve Harvey Law LLC in Philadelphia filed the lawsuit, which seeks an order that puts reorders the waiting list “to reflect the medical urgency” of her situation and lets Child Doe stay home without losing Status 1A time, if staff at Children’s Hospital of Philadelphia feels it is medically acceptable.
