Because Veronica’s pregnancy was considered high-risk, and the Rosches knew there was a chance Thea could be born premature, Veronica and her husband, Zach, had already planned to give birth at NYP Alexandra Cohen Hospital based on the reputation of its NICU.
Thea came early at 34 weeks, and while the Rosches expected some complications, they were surprised to see a rash all over her body. “The first thing I said to Zach was, ‘Why does she have purple spots?’ And no one knew the answer,” Veronica says. “She was in respiratory distress, which was anticipated because her lungs weren’t fully formed at that point. So she was brought to the NICU right away, where they instantly jumped into gear.”
Eight days later, skin biopsy results revealed that Thea had a form of histiocytosis, a syndrome in which the body produces too many of a specific type of white blood cell. This was later confirmed to be Langerhans cell histiocytosis (LCH), which meant that Thea was producing too many immature Langerhans cells (immune system cells of various organs in the body) that could lead to tumors or organ damage. The rare and complex illness can act like both a cancer and a disorder of the immune system.
“There’s only a handful of reported cases in literature of this kind of neonatal LCH,” says Dr. Alexander Chou, her pediatric oncologist at NewYork-Presbyterian/Weill Cornell Medical Center. Doctors across multiple pediatric specialties at NewYork-Presbyterian’s children’s hospitals, including NYP Alexandra Cohen Hospital, NYP Komansky Children’s Hospital and NYP Morgan Stanley Children’s Hospital, needed to consult on her treatment — especially when the condition spread from her skin to other organs such as her gastrointestinal tract, eye, spleen, liver, and lymph nodes. Pathologists, gastroenterologists, cardiologists, pulmonologists, and ophthalmologists were just a few of the many specialists who were tapped for their expertise. The complexity of her illness meant that “this was the kind of multidisciplinary care we had to deliver,” says Dr. Chou, who is also an interim assistant professor of pediatrics at Weill Cornell Medicine.
Thea had to undergo numerous blood draws, X-rays, MRIs, colonoscopies, and other tests to help doctors figure out her treatment plan, which included different chemotherapies and medications. In the fall, Thea started a medication that finally helped manage her symptoms well enough to enable her to go home. She’ll continue to see Dr. Chou and other specialists every one to two weeks, but as an outpatient.
“We get to finally take her home because they’ve gotten her to a point where she can live, and live happily,” Zach says. “We’re looking forward to not having to say goodbye to her every night.”