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Levine Children’s Hospital Faces Pressure for Policy Changes After Tragic Loss

"Children's hospital policy meeting"

Levine Children’s Hospital: Rock Hill Family Pushes For Change After Tragic Loss

In Charlotte, North Carolina, a family grieving the loss of their daughter has challenged the Levine Children Children’s Hospital to implement significant policy changes. Melissa and Brian Powell tragically lost their nine-year-old daughter and now question the quality of care she received at the hospital in her final months.

Life With Trisomy 13

The Powell’s were aware their daughter, Avonlea, would face challenges from the day she was born. Diagnosed with a rare genetic disorder, Trisomy 13, Avonlea’s parents prepared themselves for the worst. Nevertheless, she defied the odds and lived well beyond the seven days that many with her condition survive. Speaking of Avonlea, Melissa said, “She loved to be in her little chair. She loves to be laying on the ground with the girls kind of running around her.”

Health Complexities

However, in April 2023, then nine-year-old Avonlea was admitted to Levine Children’s Hospital due to a urinary tract infection, which was then followed by a series of seizures that led to cardiac arrest. Despite their best efforts to comfort their daughter, Melissa and Brian were at a loss to understand the turn of events. They were led to believe that their daughter wouldn’t make it, and the family was called to the hospital. Unexpectedly, the hospital altered her seizure medication, which pulled her back from the brink of death. Melissa said, “basically it makes us feel like we have to have a medical degree just to know what to even ask for.”

Failure in Care

Later, the Powells learned Avonlea was suffering from heart failure aggravating her kidney condition. They contemplated moving Avonlea’s care to a different hospital, questioning how they were just finding out about her heart condition. The family eventually decided to move Avonlea to Novant in August 2023, but by then, her health had deteriorated beyond reversal due to repeated seizures. Melissa said, “I think the last few days I was just in denial.”

A Tragic Loss

Heartbreakingly, Avonlea Claire Powell passed away on October 17, 2023.

A Plea for Change

After the tragedy, Melissa and Brian courageously decided to prevent this situation from repeating with other families. They met with Levine Children’s Hospital’s Chief Medical Officer, Dr. Andrew Herman, and recorded the conversation. During the exchange, Melissa said, “This hospital needs some updated education on the complexity of Trisomy 13 and 18.” to which Dr. Herman replied, ‘I don’t disagree.”

Empty Promises

Levine Children’s Hospital committed to educate its doctors on Trisomy 13 and improve communication between parents and doctors. However, no tangible changes have come forth; an unfortunate testament to the Powells’ tragic narrative. Melissa said, “We just have to live the rest of our lives wondering if they had done everything according to proper set of standards.”

Hospital Responds

In response to the family’s outcry, a hospital spokesman responded, albeit in vague terms, saying, “ We value feedback and encourage our patients and their families to share their experiences and suggestions with us.” The family is still waiting to see change come to life.

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