A Special NICU Graduation: After 336 Days in the NICU, Thea Rosch Goes Home!

The red carpet has been rolled out; congratulatory signs and a large framed photo collage adorn a long corridor. A crowd gathers, many of them wiping away tears, as they eagerly await their guest of honor. When the VIP finally rounds the corner, the hallway erupts into cheers and applause.

The adoration is for Thea Rosch, who “graduated” from the neonatal intensive care unit (NICU) at NewYork-Presbyterian Alexandra Cohen Hospital for Women and Newborns on March 22, 2023, after spending the first 11 months of her life being treated there for a rare blood-cell disorder.

With the help of an extensive care team that included numerous doctors, nurses, child life specialists, therapists, a social worker, and more, Thea became well enough to leave the hospital in time to celebrate her first birthday at home. “Thank you, absolutely everyone. She would not be who she is and where she is without every single one of you here,” Thea’s mom, Veronica Rosch, says to the large crowd that has come to send Thea off. “You guys have saved our daughter’s life.”

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.”

A nearly year-long stay in the hospital meant that the NICU nurses became some of the most influential people in Thea’s early life. “As Thea was growing, the nurses, therapists, and other specialists she was with were really helping her with her development — reading to her, talking to her, playing with her,” Veronica says. “Everyone was going above and beyond to make sure she was not only getting the medical care she needed, but also the developmental care she needed. She gets excited when she sees them. We consider them aunts to her.”

“Seeing the change from her darkest days to seeing her laughing and happy now and being able to go home with her family — it’s an incredible feeling,” says Lilly Fox, one of Thea’s NICU nurses. “She is a really special girl, as was her journey here. We very much feel like we are part of Thea’s family.”

The Rosches also credit numerous other care team members with providing support to Thea and themselves during an uncertain and scary time, from the Pediatric Advanced Care Team, who helped with Thea’s pain management; to Child Life Services, who provided emotional, developmental, and psychosocial support; to their social worker, the chaplains, and the reception and security staff members.

“You expect people to check in on you, but for them to sit there and listen to your bad days and your good days and your extremely hard days was a comfort,” Veronica says. “They never once looked at us as, ‘Oh, those are the parents of the sick child.’ They got to learn who we were as people.”

“Even just having banter with the front desk staff or security guards about sports or TV shows would help us drop our guard before we got upstairs,” Zach adds. “That was always nice.”

Even though Thea is leaving the hospital, the Rosches are bringing home items that are symbolic of the affection she received there: boxes of books, swaddles, and decorative hairbands. Plus, the couple knows Thea will always carry a bit of the care team inside of her.

“The personality she has is formed by a little bit of each and every one of these people who have interacted with her,” Veronica says. “They say you become who you are based on the people who are around you. And the way our daughter loves is a reflection of how these people have loved her and cared for her.”