Ingrid’s story: A multidisciplinary dress rehearsal helps baby and family thrive after high-risk surgery

When Rachael Smith-Ramos went in for her 35-week ultrasound, doctors noticed an unusual, vascular (blood vessel-filled) mass on her baby’s neck, precariously close to the vocal cords and facial nerves. The mass was putting the baby’s airway at risk of collapsing, which could affect baby Ingrid’s breathing. After several tests and consults, Rachael and her husband, Ryan, of Holyoke, Mass., learned their daughter would need surgery to remove the mass almost immediately after birth.

One of the potential surgical options was an EXIT procedure, a high-risk procedure in which doctors partially deliver a baby via C-section while they remain attached to the placenta. This allows a baby to receive oxygen and nutrients from the mother while doctors establish a safe airway for the baby.

Unsure of what to do but clinging to the hope that Ingrid would not need an EXIT procedure, Rachael and Ryan called the Fetal Care Program at Mass General for Children (MGfC).

“When we called, Karen Parsons picked up the phone and we thought ‘Wow, she really knows her stuff.’ We felt so supported and cared for right from that first phone call,” said Rachael. “It was almost like we already trusted that we were with the right people to do whatever was needed for Ingrid and for our family.”

The Fetal Care Program at MGfC provides care to babies who have various unexpected congenital abnormalities or genetic conditions. It also provides prenatal testing and monitoring for high-risk or complicated pregnancies. Engaging with families early on is key to building partnerships between families and providers.

When families enroll in the Fetal Care Program, their babies require specialized care from several specialty providers. “In this role, I advocate for someone who isn’t even born yet or for families who don’t know what to do or what their next steps are,” said Karen Parsons, RN, nurse coordinator for the Fetal Care Program. “In Ingrid’s case, it was providers from the Neonatal Intensive Care Unit, Pediatric Ear, Nose and Throat, Pediatric Surgery, Maternal Fetal Medicine, her family and more.”

The multidisciplinary approach allows for expertise from all areas – a key element in the care of babies who often have complex needs. “This approach was immensely helpful, especially for Ingrid’s case because everyone brings a different expertise and an expanded realm of thought,” said David Lawlor, MD, of Pediatric Surgery and one of Ingrid’s surgeons. “You are more likely to consider multiple viewpoints and even thought Ingrid’s case was strictly pediatric, knowing we have access to adult care is advantageous if the need arises.”

The weeks leading up to Ingrid’s birth became a dress rehearsal for the final performance. The operating room became a stage and the care team became an orchestra with Parsons as the conductor. Everyone – from the doctors to nurses to the Ramos family – knew exactly what to do and when to do it.

Ingrid was born via C-section at 39 weeks on March 8, 2019 – with no need for an EXIT procedure. As soon as she was born, doctors dropped the drape so Rachael and Ryan could see their beautiful little girl. As doctors stitched Rachael up, Ingrid was carried to the other side of the operating room where Christopher Hartnick, MD, of Pediatric Otolaryngology, began surgery to place the tracheostomy tube, or trach, in Ingrid’s airway.

“What we do well is establish strong relationships with families early on, and that’s what sees you through,” said Hartnick, chief of Pediatric Otolaryngology and director of the Pediatric Aerodigestive Center at MGfC and Massachusetts Eye and Ear. “We work as a team and especially in Ingrid’s case where there was a possibility of doing an EXIT procedure, there are a lot of hands involved, from doctors to nurses to anesthesiologists. But there is only one baby and one mother. We have to figure out whose hands go where and what they do at a given time.”

Two days later, Lawlor removed the mass from Ingrid’s neck. What it was, however, was still a mystery. During Rachael’s pregnancy, doctors suspected it was one of two things – excess thyroid tissue or a neuroblastoma, a rare childhood cancer that develops from immature nerve cells in various parts of the body. After closer inspection at the lab, the mass was the former. Doctors also discovered that Ingrid had tracheomalacia, or a floppy airway, and a paralyzed right vocal cord, just under the mass.

Now just shy of 18 months old, Ingrid is a dark-haired beauty with a bright, cheery personality. She has met all her developmental milestones except speech, which she will work on once the trach is removed. While she still has tracheomalacia, her vocal cords are no longer paralyzed.

“Ingrid is almost walking now. She is a smart, feisty baby and we know her quality of life is better because of the care she received at MGfC and because of the trach,” said Rachael. “She hasn’t had to work hard to breathe and she’s grown and thrived because of it.”