Brigham NICU graduate Cali Durant (pictured above) is one of more than 100 babies who have benefited from a new program that supports families of medically complex infants for several weeks following their discharge from the hospital.

About a month into her son’s stay in the Brigham’s Neonatal Intensive Care Unit (NICU), Yanai Dandridge was both excited and nervous when staff approached her with the opportunity to bring her baby, Cali, home sooner than expected. Since delivering him at 33 weeks for safety reasons — due to a rare, life-threatening pregnancy complication known as hemolysis, elevated liver enzymes and low platelets (HELLP) syndrome — Dandridge eagerly watched her son grow bigger and stronger in the NICU’s expert care.

Once Cali was medically stable, NICU staff said he was eligible for discharge through a new program for babies like him called Transition to Home (TTH). Launched in October 2021 in collaboration with several Mass General Brigham hospitals, the virtual care program delivers continued support to families with medically complex NICU graduates during their first weeks home.

“When you’re at home without the support of hospital staff, it feels a little different, so having this resource was so nice,” Dandridge shared. “It was very helpful, especially as a first-time parent. We were able to ask any questions we had. They alleviate my worries with real-life facts, tangible solutions and comfort. It’s immensely helpful.”

Many infants followed with the TTH program and discharged home with on-going medical needs and medical equipment, such as feeding tubes or oxygen. Before leaving the hospital, NICU nurses teach caregivers how to safely replace their baby’s nasogastric (NG) tube at home and how to enter their baby’s daily metrics — such as weight, milk or formula intake, output (number of diapers) and oxygen saturation — into their Mass General Brigham Patient Gateway portal. Metrics are monitored daily by pediatrician Mollie Warren, MD, director of the program, and her team.

Equipping families with the resources, information and confidence to safely care for their babies at home often saves them days, sometimes even weeks, of additional hospital stay, according to the TTH team.

“Leaving the NICU and the comprehensive support it provides can be stressful, especially during the first few weeks transitioning to the home environment,” said Warren. “Our goal is to provide assistance during this time, ensuring babies continue to do well while also championing for their caregivers in a family-centered way.”

Warren was inspired to begin this program in part from her own personal experience. “My daughter spent five months in the NICU after she was born,” she shared. “When my husband and I were finally able to bring her home, we were both nervous, even though we’re both doctors, so I can only imagine how families without medical knowledge feel.”

Since the program began, the team has cared for 100-plus infants and continues to grow.

“This program helps transition families from high-tech monitoring in the NICU to a seamless family unit at home,” said Debbie Giambanco, DNP, NNP-BC, PMHNP-BC. “Helping them manage feeding issues, poor sleep and very high anxiety is invaluable.”

Comprehensive Care

All patients in the Growth and Development Unit of the NICU are eligible for the program while other NICU babies are evaluated for eligibility, including those who go home with oxygen or require an NG tube for feeding to supplement nutrition while learning how to eat.

“We work closely with the family to help them understand their baby’s unique health needs and feel confident in going home,” said Mara Sceery, RNCC, care coordinator. “It’s customized to each baby based on their and their family’s needs.”

Families are followed virtually over the course of two to four weeks. During that time, Warren is available by pager and conducts weekly virtual visits to answer any questions and make sure the babies are growing appropriately. She also communicates with local pediatricians to provide information about the baby’s NICU stay and smooth the transition.

“We try to help parents feel empowered and advocate for themselves and their baby’s needs,” she said.

Given the amount of time NICU graduates typically need to learn to eat independently, the ability for families to replace NG tubes at home can provide a reduced length of stay.

“Oftentimes, babies spend the last few weeks in the hospital just trying to learn how to eat, whether by bottle-feeding or breastfeeding, before they can be discharged from the hospital,” explained Warren. “This is completely on the baby’s own timeline. You can’t just give them a bottle and expect them to be able to figure it out.”

Families in eligible zip codes who don’t have access to technology at home are supported through the Mass General Brigham United Against Racism Patient/Family Tablet Loan Program. “If a family doesn’t have a computer or access to Wi-Fi, we loan them the tools they need,” said Warren.

Additionally, the Transition to Home team makes referrals to Bridges to Moms, supported by Roseanna H. Means, MD, for families with housing insecurities. “If a family whose child is in the NICU doesn’t have housing or if they have any transportation challenges, they are automatically enrolled in our program, even if the baby does not have medically complex needs,” said Warren.

Collaboration Is Key

The Brigham NICU team collaborates with the outpatient feeding and nutrition teams at Mass Ear and Ear (MEEI), Massachusetts General Hospital (MGH) and Newton-Wellesley Hospital to provide ongoing, specialized care close to home.

“We help babies transition from the NG tubes, and we have a pulmonary and GI specialist and speech pathologist and dietitians to help us safely remove feeding tubes,” said Christopher Hartnick, MD, MS, director of the Division of Pediatric Otolaryngology and of the Pediatric Airway, Voice, and Swallowing Center at MEEI. “For those who don’t have an NG tube but have difficulties feeding and/or breathing, we help ensure they do so safely.”

Collaboration is vital in providing patients with a coordinated and seamless experience, he added. “We are all patient-focused, and we develop a team approach so that we can care for the children and their families together,” Hartnick said.

After babies graduate from the TTH program, they are referred to other Mass General Brigham programs to support their continued growth and development. These include the MGH Feeding and/or Aerodigestive Clinics for continued feeding support and the NICU Follow-Up Program in the Center for Child Development at the Brigham.

Additionally, if families enrolled in the program need hands-on support replacing their baby’s NG tube, they can receive direct access to care through the emergency department at MEEI, or the Special Care Nursery at Newton-Wellesley without the typical ED wait times.

Dandridge spoke highly of her experience with the program. “Everyone was so kind and genuine,” she commented. “I could feel that they genuinely cared about what I went through and what was to come for both my baby and me. I’m forever grateful.”