Providers at Franciscan Children’s Hospital in Boston, MA lined the hallways to say goodbye to baby Helen, who spent 15 months in the NICU after being born at just 28 weeks gestation in December 2021. Her twin sister Alma got to go home but Helen had to stay in the hospital because she needed additional care due to medical complications.
On March 15, Helen finally got the all clear to go home with her mothers Harriet Alexander and Isabela Alexander-Astiz Le Bras. It was a tearful moment that both women say they will never forget.
The staff put together a bubble parade for the family as Helen made her first trip outdoors. Nurses, doctors, and aides blew bubbles at her as she passed by.
“We were a little nervous how Helen was going to take it … just going out,” said Le Bras. “She had never gone outside in her wagon before and she was really a little champ.”
“We walked down the hall to the bubble parade. She was waving at everybody, a little confused, but a lot of the nurses, nurse practitioners, respiratory technicians, child life specialists, therapists were all there bidding her off with the bubble parade.”
“It was a really emotional, I’m gonna say, week, leading up to her going home,” Alexander added. “It felt very surreal, and I think we were really excited and very ready for her to come home, but it also is kind of a scary thing to bring a medically complex kid [home] from the hospital.”
Alexander and La Bras said the hospital started to feel like a second home. They traveled to the facility frequently from their home in Cape Cod where they both work as oceanographers at the Woods Hole Oceanographic Institution in Falmouth, MA.
“Helen was receiving support for her respiratory system so she was getting weaned off of the support that she needed and getting stronger and ready to go home,” Alexander said. “But she also received physical therapy, occupational therapy and speech therapy, as well as music therapy and a couple other wonderful services that they have at [Franciscan Children’s], such as child life [specialists] who come and make the hospital environment a little bit more kid friendly.”
The family is relieved to finally be together after so many months apart.
“Helen has taken to being home much better than we ever imagined,” Le Bras said. “She’s been really calm and happy.”
Having both twins together again has been an adjustment, but the new moms say the sisters are getting along just fine.
Alexander added, “One thing that I really hope that [the twins] are able to internalize is that their health does not define who they are or their worth. We love them no matter how healthy or not healthy they might be at any moment. They have shown us just how strong babies, kids are. They’ve been so resilient, and they’ve worked so hard to get to where they are and we’re excited to see where they go.”
The experience of having a child in the NICU was eye-opening for both parents. They are sharing their story to show other women what it’s like to not be able to bring your child home from hospital after giving birth.
“I think this process has opened our eyes to what it’s like having a child who has a complex medical situation and how that impacts your life more broadly. It’s impacted our careers, it’s impacted our family, basically every aspect of our life,” Alexander said. “And I think at times it can be really isolating having a kid who has a lot of complex needs, and we found great community in parents of kids like Helen … so I think sharing those stories is important.”