My son Graham was born on March 17, 2014. As a family with Irish lineage, and living in Boston at the time, my husband and I couldn’t have imagined a more perfect birthdate. Our little shamrock came bouncing into the world after three long days of labor. We couldn’t get enough of his strawberry blonde hair, perfectly round head and soft ears. If anyone thought we were obsessed with our dog at the time, they had another thing coming when Graham arrived.
When he started to smile and then eventually laugh, he garnered the attention of every stranger we met. Grocery stores, the coffee shop, Grandma’s favorite boutique in town — we started calling Graham the Mayor of Boston. In his brief life, he lit up our entire world.
When Graham was 4.5 months old he was found unresponsive at an in-home daycare during naptime.
We spent the next three days at Boston Children’s Hospital hoping he would wake up. Maybe he would have a disability, my husband and I thought. The doctors told us he might lose his eyesight, or hearing. But as the days and nights progressed, we realized Graham wouldn’t come home with us at all.
When we left the hospital I remember my husband saying, “Let’s keep dancing. We’ll carry him with us forever.” We had no idea what that would mean.
Our grieving process looked much like what I imagine other families who experience a sudden unexpected loss. We screamed, we cried, we found batting cages to get the anger out. We talked openly about how grief and coping might affect our marriage.
We gave each other space, and we found ways to cope together, like ripping out every bush in our front yard and installing a new garden for Graham with the love and support of friends from all over the country. We’re fortunate to have made it through, but our grief journey will never be over.
In those initial weeks one thing I couldn’t let go of was the question, why? Why did this happen? And is there a way our loss of Graham could prevent future families from experiencing the same loss?
I called every place I could find on the internet and had some really frustrating and angry conversations with people who were trying to help but didn’t have answers for me. I remember yelling at a nurse on the phone at our local SIDS center telling her that my son didn’t just die of an unexplained problem. There had to be more.
That’s when we found out about a free medical investigation program, specifically for cases of sudden unexpected/infant death, called Robert’s Program at Boston Children’s Hospital. We couldn’t hand over our medical records fast enough.
The program brought together experts researching SIDS and conducted a full medical history review and worked with the medical examiner to obtain autopsy samples. As parents, we participated in genetic testing to find out if any anomalies we carried related to other SIDS cases. We received regular updates from the research program director and were informed every step of the way. In the end, we actively participated in exploring a couple of theories, and we know that Graham’s data lives on as part of the Robert’s Program. It gives us comfort every time we see his name in an email from the program, knowing that his medical information is moving research forward.
What I know for sure is that Graham’s legacy isn’t just his medical data and the hope that we can finally understand SIDS and other rare diseases with high infant mortality. It’s also in the way his now-6-year-old sister and 4-year-old brother talk about their big brother on the moon. It’s in the way our friends and family say his name in regular conversation rather than shying away from “bringing him up.”
Losing Graham brought me into the rare disease research field. Without him I may never have known that millions of families all over the world are searching for answers and demanding research. It’s perhaps my greatest honor that while I lost Graham physically, I carry him every day to work with me. His legacy drives me to demand answers, to push forward, to center everything we do with respect and inclusivity. I remain hopeful that as more data is appropriately gathered, prepared and made available to expert researchers, families like mine and many more will find the answers we deserve, and solutions to prevent future loss.
AllStripes’ research programs are open to legally eligible families who want to contribute the medical history of a loved one who has passed away. Contributing records on behalf of a loved one who has passed away can create a meaningful legacy and provide valuable information to improve the lives of patients and their families for generations to come.