No more missing out: Bouncing back after an SCT

Emilya after treatment for her SCT
PHOTOS: COURTESY OF THE SHNAYDER FAMILY

Like many parents, Kat Shnayder and her husband, Serge, got creative as they prepared for the birth of their daughter, Emilya: Kat took to Pinterest to design the nursery, while Serge learned woodworking and created handmade toys. But their productivity served another purpose, too: “We needed to stay occupied,” explains Serge.

Months earlier — on a Friday before Martin Luther King Jr. Day — the couple was at a routine ultrasound appointment to learn their baby’s sex when the clinician called them aside. At the same time they learned that they were having a girl, they were told that she had a tumor at the base of her tailbone called a sacrococcygeal teratoma (SCT).

Although SCTs are usually benign, they can grow to be very large, which can put pressure on surrounding organs and cause the fetus’s heart to work harder, potentially leading to hydrops, or heart failure. Suddenly, what should have been a joyful moment was fraught with fear and apprehension.

Emilya recovering from surgery for an SCT

A waiting game

Kat’s obstetrician referred her to the Advanced Fetal Care Center (AFCC) at Boston Children’s Hospital. The couple left a message and prepared to anxiously wait out the holiday weekend. So it was a surprise when, that evening, they received a call from Donna Morash, a registered nurse in the AFCC. Without even having met them yet, she seemed to understand the Shnayders’ concern. “She told us she had waited to leave work so she could call us,” Serge remembers.

Within a week, they had an appointment with Dr. Jason Smithers, who confirmed the SCT and answered their questions. “He told us that the teratoma was only about 4 centimeters, so it shouldn’t present a problem as long as it didn’t increase in size,” says Kat. But the tumor did begin to grow — and quickly. By the 30th week of Kat’s pregnancy, it had reached nearly 14 centimeters. Just before her 31st week, she was admitted to the hospital for a C-section.

Emilya is thriving after being treated for an SCT

Ready for surgery

Just four days after she was born, Emilya underwent surgery with Dr. Smithers to remove the SCT. While they knew the procedure was necessary, the night before the operation was nerve wracking. “You know she needs surgery and you just want to do it, but filling out all the forms reminds you of the possible risks and complications,” says Serge, who found that speaking with Emilya’s anesthesiologists, Dr. Christian Seefelder and Dr. Asheen Rama, helped ease his concerns.

Regular updates throughout the 7-hour surgery also helped, although the couple says they remained “on pins and needles” until it was over. The procedure was a success, but Emilya had to remain in Boston Children’s Neonatal Intensive Care Unit (NICU) as she recovered and grew. There, she received care from NICU nurses Stephanie Wild, Deb White and Morgan Nealy.

“She weighed a little over 7 pounds when she was born, but only about 3 pounds after surgery,” says Kat. “Now, she’s back up to her birth weight, but with a different distribution — instead of a tumor, she’s got those little ‘baby rolls.’”

“We can never repay Dr. Smithers, the NICU staff and the rest of Emilya’s care team for what they’ve done for her,” says Serge. He and Kat, who as children moved to the U.S. from Ukraine and Russia respectively, believe that their daughter would not have survived had she been born in their home countries.

Emilya meets the family dog after being treated for an SCT

Celebrating milestones

During their time in the NICU, the Shnayders found themselves celebrating milestones both big and small: the day Emilya’s feeding tube was removed, the day they were able to dress her in a pair of pants, the day they were first able to see her bellybutton. “They say everything happens for a reason, but for a long time, I couldn’t find a reason for this,” says Kat. “But now I think maybe it was to teach us patience.”

When their daughter finally came home for the first time in June, they were able to fulfill another dream: to simply go for a walk outdoors together as a family. “When she was in the NICU, she was always looking around at what everyone was doing,” Kat remembers. “She’s really mellow, but she definitely had a case of FOMO [fear of missing out].”

Today, Emilya is laidback baby with a full head of hair — and a big personality to match. Whether she’s playing with her parents, hanging out in the backyard with the family’s dog or just enjoying life at home, she no longer has to worry about missing out on anything.

Learn about the Advanced Fetal Care Center and the Neonatal Intensive Care Unit.