In October 2020, in light of their baby Luca’s life-span limiting illness — eight-month old Luca had been diagnosed with a rare genetic mutation — Brittany and Dave Lagarce had to decide whether it would be best for Luca to stay in the hospital where he could be closely monitored, or to keep him home where he could spend his remaining time in comfort with his family.
“We had exhausted the available treatment options,” says Brittany. “We could have continued to monitor Luca in the hospital, even though we were as certain as can be, based on the information [David Sweetser, MD, PhD, chair of Medical Genetics and Metabolism, the researcher who diagnosed Luca] shared with us, that Luca wasn’t going to live long. One thing we knew for sure was that we didn’t want Luca to spend his remaining days in unnecessary discomfort. In the moment, when you’re doing everything you can not to accept an inevitable outcome, it’s hard to take a step back and realize there’s another option. The palliative care team helped us to understand that being at home with Luca was a real option. They gave us a clear picture of what it would be like, then they were with us the whole way.”
“Britt and I thought hard about what Luca would tell us if he could,” says Dave. “We thought about how we wanted to spend our child’s remaining time. Ultimately, we decided the best thing for him was to keep him home and focus on enjoying that time together as a family.”
Bringing Luca Home
So, in early October 2020, the Lagarce family went home. With the advocacy and round-the-clock support of Luca’s Pediatric Supportive and Palliative Care team at Mass General for Children (MGfC) — Jeanne MacDonald, MD, Katharine Davidoff, MD, and Brittany Kelly, NP — Dave and Brittany had everything they needed, from medication to specialist access, music therapy to feeding advice. They didn’t know how much time they had with Luca, so every moment suddenly became important.
Putting him to bed became special. Reading to him was a joy. Watching soccer became Dave and Luca’s favorite pastime — they were Manchester United fans. He was always surrounded by people: Dave and Brittany’s families, close friends, his occupational therapist.
The anti-seizure medication, which reduced the abnormal electrical activity in Luca’s brain, was what gave him time to be at ease. Adjusting his medications to maintain optimal comfort was key.
“You have to understand that when Luca was having seizures or was inconsolable, he couldn’t maintain eye contact, so you felt he wasn’t really there with you,” shares Brittany. “This made the moments when he was calm, and could look Dave and I in the eye, very special. That eye contact was something I will never forget; you could tell that he knew he was loved. Those moments of recognition were indescribable.”
Making Moments Matter
“Someone from the palliative care team was on the phone with us daily,” says Brittany. “They were advising us about medication, food and sleep, then, they would follow up with specialists or coordinate with the hospice team.”
“Backed by the guidance and kindness of nurse Kelly, Drs. MacDonald and Davidoff and our hospice nurse, we were able to focus on making Luca’s days the best they could possibly be,” says Dave. “We did things like celebrate Christmas early. We set up the Christmas tree, made ornaments and handprints, got gifts and matching pajamas — you name it, we did it.”
“Luca loved music therapy,” says Brittany. “That was another thing that helped him to be calm. At the sound of the guitar, his eyes would either widen in wonder or he would peacefully drift off to sleep. We were very purposely making memories because we knew the time was coming soon when that’s all we would have.”
Brittany and Dave say they will never forget that these invaluable experiences were made possible because of the MGfC Pediatric Supportive and Palliative Care team. The team’s coordination of a complex situation, that focused on care rather than on a cure, facilitated meaningful and protected time for Luca and his family.
“Palliative Care is all about care, and that’s one of the things we do best at Mass General,” says Dr. Davidoff. “The philosophy can be summed up as, ‘You matter because you are you, you matter to the very last moment of your life.’”
Luca’s Enduring Legacy
Luca passed away in his grandparents’ home in November of 2020, surrounded by his family and in the arms of his parents. Brittany and Dave have set up a fund in Luca’s memory: Luca’s Legacy Fund. This fund raises money to support Dr. Sweetser’s research in genetics.
“This work in genetics and stem cells is very expensive,” concludes Dr. Sweetser. “You just can’t do it unless you have a special source of funding. It’s amazing what Brittany and David have achieved so far. Luca’s legacy is going to transform the lives of so many children.”
To support this effort, Dave has written a children’s book, Little Luca, that celebrates the uniqueness of a little elephant named Luca. His dedication says it all:
“To our son, Luca.
You’ve made such an amazing
impact on so many lives.
This book is another example
of how you continue to provide perspective
and spread the message of love and respect to all.
Thank you for continuing to guide our family
and for choosing to be our son.
We love you to the moon and back.”