When Francesca Webster was pregnant with her twin daughters, Emma and Zoe, she said each unborn baby took on a distinct personality.
“I knew which side was which,” Webster said. While Emma thumped and kicked, Zoe remained calm and peaceful. As they grew up, these same traits became defining character features.
But Emma, the feisty, mischievous troublemaker who loved corn and shredded cheese, would not live long. She died of cancer last summer, just before her third birthday.
Zoe, about to turn 4, has started asking questions.
“It’s hard when she asks,” her mom said. “She thinks she’s still at the hospital.”
Webster and her husband, Dave, of Bel Air, said the providers at Johns Hopkins Hospital’s neonatal intensive care unit failed to communicate that ultrasounds of Emma’s body showed a cystic mass in her right adrenal gland. The mass, which grew to be more than three times its size in about two years, was neuroblastoma, a type of cancer found usually in children 5 or younger.
Attorneys representing the family filed a lawsuit Monday on their behalf in Baltimore Circuit Court, alleging that the hospital and its staff acted negligently by not communicating the existence of this mass, and that led to Emma’s death.
Webster is a nurse in Hopkins’ labor and delivery unit and worked there at the time of her daughters’ birth. As a result, her family is insured through the hospital’s employee health insurance company, complicating the matter. The family’s lawyer Chris Norman said Hopkins, in effect, could recoup some funds the family might win in a lawsuit by asserting a lien on medical bills the family owes.
Webster has described the situation with her employer as uncomfortable, but acknowledges that the hospital is home to kind, hardworking employees and world-class specialists whom she is proud to know. She plans to deliver another baby there this month.
“We want someone to take responsibility,” Dave Webster said, adding that the process of litigating Emma’s death has been painful, forcing him to relive the trauma of her sickness. “We want them to admit some wrongdoing.”
Kim Hoppe, a spokesperson for Johns Hopkins Medicine, said the organization does not comment on the details of pending or ongoing litigation, but extends its deepest sympathies to the family.
Johns Hopkins Hospital and three health care providers were named as defendants in the lawsuit. Their attorneys were not listed in online court records.
Born prematurely on Aug. 7, 2016, fraternal twins Emma and Zoe were examined in the NICU. After taking ultrasounds of Emma’s body, a nurse practitioner wrote in her history and physical note on Aug. 9 that an abdominal mass could be neuroblastoma, the complaint says.
But the records do not state that this information was conveyed to the Websters, according to the complaint filed by an attorney with Baltimore-based medical malpractice firm Wais, Vogelstein, Forman & Offutt. The family maintains that they were not informed of the danger.
The notes recorded by the same nurse practitioner recommended they schedule another ultrasound a week after Emma left the hospital through their primary care provider, but there is no indication that this information was relayed to the family by the discharging doctor or nurse, the lawsuit says. The discharge documents also did not include any information about tending to or monitoring the adrenal cyst, according to the complaint.
Because of this miscommunication, Dave and Francesca Webster did not know that the mass existed or that it required follow-up visits, they said. It went untreated for nearly two years.
By July 2018, Emma began experiencing fevers, stomach problems and congestion. Abdominal imaging conducted at the end of that month showed liver and spleen enlargement and displacement, according to the complaint. An ultrasound at Hopkins showed a large abdominal mass, noted to be suspicious for neuroblastoma.
Further investigation found Emma had cancer throughout her body, including in her abdomen, lymph nodes, upper chest, neck, skull, pelvis, spine and left femur, which originated at the site of her adrenal cyst. After undergoing chemotherapy and radiation, Emma died about 10 months later, on June 3, 2019.
“It was inspiring to see her be so resilient,” Dave Webster said. “It was a terrible 10 months of hell.”
A foundation set up in Emma’s name seeks to cover families’ expenses associated with pediatric care, including meals, parking and related health care costs.
Francesca Webster said she hopes the lawsuit raises awareness about the importance of parents asking questions about their children’s health and reviewing medical records.
“What we want to see done is to have Hopkins take responsibility for the death of this little girl and do things internally to make sure this doesn’t happen to another family,” said Norman, the family’s attorney.
Caps on the amount of money awarded for medical malpractice cases mean the family can win only so much, Norman said. For a case that arose in 2019, the cap on noneconomic damages is $815,000. With a wrongful death action added to that sum, he said the family could win a little more than $1 million.
A certificate of a qualified expert — a written record from a board-certified medical professional needed to pursue medical malpractice cases in Maryland — was authored by Dr. Asher Marks, the director of pediatric neuro-oncology at Yale Medicine. He said that “there were deviations from the applicable standards of care” in Hopkins’ treatment of Emma in the NICU.
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He said the cancer progressed from Stage 1 to Stage 4 because of Hopkins’ failure to inform the child’s parents of the ultrasound findings.
“The deviations … were the direct and proximate cause of Emma Webster’s injuries and damages, including her death,” Marks, also an assistant professor of pediatrics at Yale School of Medicine, said in the certificate.
Had the discharging doctor and nurse informed the Webster family of the adrenal mass and that it could be cancerous and required monitoring, Marks said, Emma likely would have had a good chance of survival.
“With appropriate follow-up and treatment, it is likely that Emma’s cancer would have been detected and treated early, and that she would have only needed a simple resection of her primary mass in order to be cured.”
Days away from their baby’s due date, Francesca and Dave Webster said they hope no rigorous medical record review will be necessary after being discharged — but they’re prepared.