A partner through amniotic band syndrome: Jace’s story

Jace is a happy, energetic 9-month-old whose big brown eyes light up a room. He’s adored by his parents, Kait and Evan, who not only delight in being first-time parents but are also incredibly appreciative of the care that helped save their son. It was care that took a village, Kait and Evan say — one that included fetal surgeons Dr. Eyal Krispin, Dr. Alireza Shamshirsaz (Dr. Shami), and others at Boston Children’s Maternal Fetal Care Center, in affiliation with Brigham and Women’s Hospital (MFCC), who treated Jace for amniotic band syndrome before he was even born.

Diagnosing amniotic band syndrome and the decision for fetal surgery

Kait’s 18-week anatomy scan couldn’t detect the top of Jace’s left ring finger and his right arm appeared swollen from just above the elbow down. Kait’s doctor near her home in New York suggested reassessing with an ultrasound in a month or so, but Kait and Evan felt they couldn’t wait that long. They spoke with a family member, who helped arrange an appointment at a private ultrasound practice near his home in Boston.

Within days, Kait and Evan traveled to Boston for additional scans. The ultrasounds confirmed amniotic band syndrome, a prenatal condition that occurs when the lining of the amniotic sac tears, creating strands of tissue that wrap around the parts of the fetus and restrict blood flow and growth. From there, Kait says, it was a whirlwind.

“The team at the ultrasound facility told us that Boston Children’s performs fetal surgery, and they’d see if there’s something that they might be able to do,” Kait says. “We got an appointment with the Maternal Fetal Care Center for the following day.”

At Boston Children’s, Kait and Evan met with Dr. Krispin and others from the MFCC and Kait received advanced fetal imaging that showed that, in addition to the band restricting blood flow in Jace’s arms, another band was wrapped around the umbilical cord, restricting blood flow. The team advised fetal surgery to release the bands. Kait and Evan are thankful for the team’s compassion and support.

“Dr. Krispin told us that his phone was always on if we had any questions or changed our mind about the surgery,” Kait says. “It made a very, very scary situation feel not so scary. We felt like we couldn’t possibly have landed in better hands.”

Finding support throughout

Within hours of Kait and Evan giving the green light for surgery, the MFCC team sprang into action, and Dr. Krispin and Dr. Shami were able to release the bands, including those wrapped around his arm and his umbilical cord. What Kait and Evan remember most from the surgery was the team’s ability to never let them feel alone.

“Nurse practitioner Nicole Peace was by my side in the OR the whole time,” Kait says. “And our social worker, Meagan Bernatchez, was in the waiting room with Evan and our families. Nothing happened in the OR without Evan knowing seconds later.”

After the procedure, Kait and Evan stayed in Boston for almost a week and then returned to New York. Dr. Krispin and team kept in close contact, offering insight and expertise as they navigated the remainder of her pregnancy, which included an extended inpatient hospital stay to monitor her pregnancy after her water broke around 20 weeks.

“The Boston Children’s team felt like my safety blanket,” says Kait. “It felt like it was my parents just giving me a hug.”

Thriving and thankful

At 32 weeks, Jace decided to officially enter the world. His early arrival initially brought struggles, including respiratory distress and close monitoring for intraventricular hemorrhage (bleeding in the areas of the brain that contain the cerebral spinal fluid), but Jace overcame every obstacle in his way.

Today, Jace is thriving, meeting every milestone with a smile. The family keeps in touch with Dr. Krispin and returns to Boston Children’s to navigate corrective surgery for Jace’s right arm. They meet with Dr. Brian Labow and the Department of Plastic and Oral Surgery team to discuss releasing an indentation left by one of the bands.

Kait and Evan credit the expert care they received at their birthing hospital, the valuable guidance of the Boston Children’s team, and the power of the greater good for helping Jace through his first few weeks.

“We feel like we have two families,” Kait says. “We have our family that took care of us here in New York and our family that took care of us in Boston. There’s no way that we would have this life without them.”

Learn more about the Maternal Fetal Care Center or request a second opinion.