Rock Hill Family Seeks Policy Change at Levine Children’s Hospital After Daughter’s Tragic Death
In the wake of the tragic loss of their 9-year-old daughter, a Rock Hill family is issuing an urgent call for policy reform at Levine Children’s Hospital.
A Special Little Fighter
Melissa and Brian Powell were given the devastating news prior to the birth of their daughter, Avonlea. Doctors explained that she had a genetic disorder known as Trisomy 13. Because of this disorder, she had merely a 20% chance of being born alive, and even if she did survive, her life expectancy was only estimated to be about a week.
Expecting the worst and startled by the prognosis, the parents began making funeral arrangements. However, Avonlea proved to be a fighter. Born in March 2014, she began defying all odds. “We were really, really blessed that we were given one of the best-case scenarios for having a child with Trisomy 13,” expressed Melissa.
Mystery at the Hospital
In April 2023, nine-year-old Avonlea was admitted to Levine Children’s Hospital for a urinary tract infection. Soon after, a series of seizures followed that ultimately led to cardiac arrest. Initially, the medical team declared that their child was ‘just declining’ and called the family together to say their goodbyes.
However, in a twist of events, a different doctor later suggested changing her seizure medication as a ‘Hail Mary’. Seeing an improvement in Avonlea’s condition through the new medication raised questions in the Powell’s minds about the care and expertise provided at Levine Children’s Hospital.
Heartbreaking Conclusion
A few agonizing months passed, and the Powells decided to move Avonlea’s care from Levine’s to Novant in August. Although she showed marked improvement and was given an increased prognosis, doctors informed them that irreversible damage had been done due to the seizures in spring. And despite all the close calls and surprising comebacks Avonlea had made in her short life, she tragically passed away on October 17, 2023.
Searching for Policy Change
In the light of their immense loss, the Powell family decided to use their experience to push for reforms at Levine Children’s Hospital. In a meeting with the hospital’s Chief Medical Officer, Dr. Andrew Herman, he admitted that the institution could have performed better.
He agreed with Melissa Powell’s statement that the hospital “needs some updated education on the complexity of Trisomy 13 and 18.” He also apologized on behalf of the hospital staff and conceded that they could have done better.
Despite the hospital promising to bring in consultants to educate their clinicians better regarding Trisomy 13 and to improve parent-doctor communication, the Powells found their efforts inadequate. They subsequently filed five complaint reports against doctors and leadership members at the hospital to the North Carolina Medical Board. Months later, they continue to engage with the hospital to ensure the promised changes are implemented.
Throughout their painful journey, the Powell’s hope that sharing their daughter’s story will lead to systemic changes that could potentially avert other families from experiencing a similar ordeal.
