The day I interviewed Dr. Monique Satpute about the Center for Neonatal Transitional Care (CTNC) at Mt. Washington Pediatric Hospital (MWPH), my Facebook feed was flooded with images of a less-than-ten-pounds Little Lion Man in MWPH’s colorful playroom from 2013. Timehop photos. Sucker punch photos. You know the images I’m talking about. The ones that are heartbreakingly hard to look at because they are simultaneously filled with so much ache and so much joy.
He was just over two months old and meeting his big sister for the very first time.
It was the first time we would be together as a family.
MWPH’s child life team carefully planned the occasion and went above and beyond for us — having known us less than 24 hours. They asked about what the Bug liked and selected toys that a three-year-old would be interested in and could use to interact with her little brother. The found just the right pillow so we could comfortably position the LLM, who had heavy jaw distraction hardware on either side of his face, was just learning to hold his head up, and had a trach. They turned on quiet music and turned down the lights so they weren’t harsh. They ensured that that room was reserved so we had privacy for this moment. They even made a card with the little guy’s footprints for the Bug. For my big sister…
As we had become accustomed to in hospital life — and honestly, parenting in general — I had no expectations for how the moment would go. Even with countless preparations and precautions, things can still go wrong. Sure the Bug had seen pictures of her brother and we had prepared her as best we could…. Bug, your brother has metal braces on each side of his face because we are growing his jaw. And see that tiny piece of plastic in his neck? That’s making sure he can breathe easily. There’s a tube in his nose that goes down his throat and helps him eat. When you meet him, you have to be very careful not to bump the braces or the piece of plastic, ok? You can tickle his feet. You can hold his hand. You can rub his head. He’ll be so excited to meet you! But kids are funny, brutally honest, and genuine. I had no idea how she would react.
She and her grandma had gone out and bought a new dress for the occasion. Pat and a child life team member met her in the lobby and walked her back to the playroom where I was sitting next to LLM.
HUGE smiles. “I’m so glad to meet you! Can I hold you??”
She didn’t see the hardware at all. And I am forever grateful to the MWPH team for that moment.
It’s moments like ours that propel Dr. Satpute and the CNTC team through their days. When babies come into the CNTC program at MWPH, it’s about getting them ready to go home. It’s about preparing their families to care for them. It’s an intermediate step to help them negotiate the path from hospital life to home life.
“When a baby is in the NICU, so much attention is paid to their immediate medical needs,” said Dr. Satpute. “The medical perspective clearly has to trump everything else. Here, we look at the whole child and help them grow.”
I’ll be very honest. I protested being transported to MWPH. Pat and I had worked so hard to build relationships with the medical caregivers at Johns Hopkins Children’s Center and GBMC NICUs, that the prospect of needing to establish rapport with an entirely new team was daunting at best. We were excruciatingly tired at that point. Now that our little guy was out of immediate medical crisis, we all needed a chance to breathe. But the team at Hopkins insisted he needed more than they could give at that time.
“I think that’s a very common reaction,” said Dr. Satpute, who completed her neonatology fellowship at Hopkins and worked in the NICU there before coming to MWPH. “Families often build strong relationships in the NICU. That’s why the very first thing we do when admitting a new baby is have a whole team meeting with the family in the Welcome Center.”
The whole team includes a case manager, neonatologist, nutritionist, nurse practitioner, occupational therapist, physical therapist, speech therapists, and respiratory therapists. Like all of MWPH’s programs, parents play a pivotal role in caregiving at the hospital. After all, the end goal is to send the family home together.
A funny thing happened when we got to MWPH. We started to exhale. It was time to start healing.
Many of the babies in the CNTC program were premature and come to the hospital to be weaned off oxygen support and learn to eat (if you’re wondering why speech therapists are part of the neonatal transitional team, they are often the experts that help with swallowing and feeding). The slower rhythm of MWPH lets patients learn to breathe and eat at their own pace, and gives them time to develop those skills in a bright, beautiful, and medically safe environment. It also provides parents time to learn to safely bathe, interact, feed, and position their medically fragile infants.
It’s a sweet spot. An incredible way to have the child’s medical needs met while providing both the baby and parents with a more home-like environment. As one of half a dozen pediatric specialty hospitals on the East Coast, MWPH is an incredible gem in our own backyard. You’ll find babies from all of the regional hospitals at MWPH. Growing, thriving, and healing after a bumpy start.
As a former NICU-based neonatologist, Dr. Satpute has a unique perspective when thinking about her patients.
“Knowing where these babies came from and what they’ve overcome… it’s amazing to be able to see them then go home.”
I am forever grateful to MWPH for giving our family the first taste of home… and this little guy his first taste of childhood.
About Mt. Washington Pediatric Hospital: Where Children go to Heal and Grow
Mt. Washington Pediatric Hospital is a specialty children’s hospital that treats more than 8,000 patients each year on an inpatient and outpatient basis. The 102-bed post-acute hospital specializes in family-focused treatment of children with serious, chronic and/or complex medical needs. MWPH has renown in feeding and sleep disorders, brain injury and rehabilitation, behavioral health and autism, neonatal transition, newborns transitioning from heroin dependence, and childhood obesity, among other service lines. Founded in 1922 as a children’s convalescent home, MWPH is a jointly owned affiliate of The University of Maryland Medical System and The Johns Hopkins Health System. To learn more, visit www.mwph.org.
To learn more about the CNTC program, watch Victoria’s Story.
Video provided by Mt. Washington Pediatric Hospital. Photos provided by the author and are property of (cool) progeny.