When Adam and Stephanie Surrey learned at their 20-week ultrasound that their fourth child would be born with serious, life-threatening lung and heart irregularities, they were devastated. But soon, they were given even more heartbreaking news: There was a good chance that their baby — whom they’d already named Marion — wouldn’t survive outside the womb for more than a few days. And while surgery was an option, there was a good chance she wouldn’t survive it.
In fact, doctors later told the Surreys that Marion’s chance of surviving surgery was actually “in the single digits.” It was then that the Missouri parents made the heartbreaking decision to forgo surgery and allow their daughter to pass away naturally.
“Some parents may have chosen surgery for their babies, and we don’t judge them,” the Surreys tell Babble. “There are no easy decisions in a scenario like this one. We felt the best thing for our baby and our family was to provide comfort care for her and let her pass when it was time for her to pass. We just couldn’t imagine her taking her last breaths on an operating table, or in a hospital, and us not being there for her.”
Baby Marion was born on October 10, 2017, and peacefully passed three days later in the loving arms of her mother.
“All she knew was love,” Adam says. “It was a good life.”
Stephanie knew that she wanted to do something to honor her daughter’s short time on earth and preserve her memories, but wasn’t sure what. While she considered organ donation, the grieving mom was told her daughter was not a good candidate, given her health issues. In addition, the Surreys were told that babies needed to be at least 12 pounds to donate organs, and Marion did not that fit that criteria, either.
That’s when Stephanie came up with the idea of pumping her breast milk and donating it to babies in need.
“We are fortunate enough to live near a hospital that rents hospital-grade breast pumps,” Adam tells Babble. “The day we brought Marion home from the hospital, her godmother ran out and picked up a breast pump for us.”
That began an incredible nine-month journey of pumping and donating breast milk for babies in the NICU at Saint Luke’s Hospital in Kansas City, as well as for other babies in need in the Surreys’ local community. In total, Stephanie pumped over 5,000 ounces of breast milk.
It was certainly an act of love for all the babies who benefited from the milk, but at its core, it was a way for Stephanie and Adam to continue to connect eiyh baby Marion even as they were grieving her loss.
“It gave us an outlet, and I think, allowed us to continue to feel connected to our baby girl even though she was no longer physically present with us,” Adam shares. “Stephanie talked a lot about feeling as though Marion were with her when she was pumping, and the times when I was up at 2 AM washing steam-cleaning pump parts for her, I felt it, too.”
The Surreys also felt strongly connected to the babies they donated milk to. A little over 3,000 ounces of breast milk was donated to the milk bank at the hospital where Marion was born. Knowing that this milk benefited other fragile babies who passed through those same walls had a big impact on the Surreys.
“We talked a lot about how maybe this milk was getting a NICU family some extra time with their baby,” says Adam. “Maybe it would even be the difference between a baby going home with its family and not surviving. I also remember connecting that if we had opted for surgery for Marion, she would have been in the NICU, and we might have needed milk for her. Stephanie has said that she felt that Marion’s purpose was to help others, and she has.”
There were times during Stephanie’s pumping journey — for example, when a virus passed through her family — that her milk was not suitable for babies in the NICU. But rather than “pumping and dumping,” the Surreys were able to connect with a local mother whose baby was in need of pumped milk, thanks to the local Facebook group, Human Milk 4 Human Babies-Missouri.
“We found a mom who didn’t mind that the milk had been exposed to whatever virus was going around, because she had other kids in the house that were exposed to the same illnesses at school, ” Adam shares, adding that Stephanie continued to donate to this mom the whole time she was pumping.
Maintaining a full-time pumping schedule wasn’t always easy, though. Like many pumping moms, Stephanie soon found that it took over her life in intensive ways. Pumping led her to miss several social engagements, and she had to lug her pump (as well as all of its many parts) to events she did attend, just to keep up with her pumping schedule.
But in the end, she says it was all worth it. In fact, when Stephanie’s milk supply dried up around the nine-month mark, she was heartbroken.
“Stephanie grieved returning the pump almost as if she were losing Marion all over again,” Adam says. “I think that in some sense pumping provided a physical connection for her, and when that ended, she felt the loss all over again, and in some ways, maybe even for the first time.”
Now, as the Surreys edge closer to one year since Marion’s passing, they are coping as best they can, though there are definitely still moments when the grief hits them hard. Still, both parents say that the experience has brought their family together in new ways, and even strengthened their marriage.
“We have always viewed, and continue to view, Marion as a blessing to us and our family,” says Adam. “Her brother and sisters talk about her all the time, draw pictures for her, and at times, cry because they miss her. We all do.”
Adam also shares that Marion’s middle name Ohana — which means “family,” and was inspired by the Disney movie, Lilo & Stitch — holds a special meaning for the Surreys. In fact, it encapsulates exactly how they want to honor and remember baby Marion.
“We chose this [name] for a number of reasons, among them being the promise it meant to her that she would always be part of our family, that she would never be forgotten,” Adam says. “Through this experience, our Ohana has grown to include the mothers and babies we were able to help. We believe that through the work that NICUs and milk banks do, no baby gets left behind or forgotten.”
In her short life (and even beyond), Marion really did make a difference in the lives of so many; and her story continues to touch the hearts of everyone who hears it.
“Our lives are forever changed,” says Adam. “We continue to be awed by the ways in which her tiny, mighty little life is changing others, many of whom we’ve never met. We are beyond blessed.”