From the moment Leigha Campbell, 32, found out she was pregnant, she knew something would be different with her baby.
Already mother to Aubrey, 6, Campbell tells Babble that she felt the word “ordained” come to her:
“I didn’t know what that meant,” she says, cradling her peppermint mocha. “It felt a little tragic, but I didn’t know if that was just me being pregnant and hormonal, [so] I prayed through a lot of difference scenarios … but it always felt a little tragic.”
Campbell’s premonition explains why, when the cheerful nurse technician paused during her son’s 19-week scan to go get the doctor, she felt “utterly prepared” and even at peace for what she was about to hear.
The doctor explained that her son had severe hydrocephalus and brain abnormalities, among other serious medical needs that were suspected to be incompatible with life. What she didn’t understand, however, was the doctor telling her that she and her husband, Matt, 32, should seriously consider whether they wanted to “entertain” this pregnancy.
“I said, ‘My pregnancy is about my baby and I will always entertain my baby,’” she remembers.
Throughout her pregnancy, Campbell continued to feel at peace, although it was challenging when medical staff thought she didn’t fully understand the severity of her son’s medical complexities. On the contrary, Campbell says she was fully aware of the challenges that lay before them as a family — she just wasn’t afraid to face them. Her firm conviction, which she credits to her Christian faith, told her that her son’s life, however brief, had been ordained from the start.
On June 6, 2017, at 38 weeks pregnant, Campbell gave birth via scheduled c-section. She remembers the moment of birth as “exhilarating.” Her son Leland was born pink and crying. He was given to his mother for a quick kiss before the NICU team took over his care.
After spending close to a month under care at both St. Joseph Hospital and Children’s Hospital of Michigan, Leland came home for about three weeks. He would be back and forth to the hospital three more times for procedures with his brain shunt before his parents were faced with the decision of how he would live with what time he had left.
They met with Dr. Tremonti, a palliative care pediatrician, who helped them decide on keeping Leland comfortable at home, barring any malfunctioning of his shunt.
“She was the one who helped us decide how he died, but also, how he would live,” Campbell says with emotion.
That night, Leigha and Matt called a family meeting to break the news to their daughter that they didn’t know how much time they had left with Leland. “It was the worst conversation of my life,” Campbell confesses. “The worst. This poor little girl had guttural wailing.”
The family ended up curling up and comforting each other on a corner of their sectional couch. Then, they dried their tears and each picked the most important thing they wanted to do with Leland while he was still here. For Leigha, it was family pictures. For Matt, it was taking his son to his first hockey game. As for Aubrey, all she wanted was Christmas with her brother. And just like that, #MissionAlive was born.
Over the next week, the family planned to embark on a series of adventures and outings designed to create a lifetime of memories together. They kicked off #MissionAlive with a family-wide celebration of life at a local Black Rock Bar & Grill and set out scheduling and purchasing tickets.
“We said, ‘We are going to live,’” Campbell explains. And when she jokingly posted a picture of one of their trunk-or-treating adventures with the hashtag #MissionAlive (a reference to her favorite Saturday Night Live skit featuring Jimmy Fallon and Justin Timberlake hashtagging), she was creating an actual hashtag for how her son would live out the rest of his days.
Soon, the family’s quest took on a life of its own. Family and friends pitched in to help, their church supported their efforts, and donations poured in to help make their adventures possible. Over the course of the next week and a half, the family enjoyed pottery painting, trunk-or-treating, a family photo session, a pumpkin patch, a Flint Firebirds hockey game, and a day at the aquarium followed by dinner at the Rainforest Cafe. And in between all of that, Leland continued to attend his regular therapy sessions, including one special appointment where he was fitted for hearing aids that allowed him to hear for the very first time.
“He hated it!” Campbell laughs. “But it’s nice for us to know that he heard us. We got to tell him that we loved him.”
One week after the family started #MissionAlive, Leland’s condition began to deteriorate following a family dinner at home. He showed signs of a stroke, and after a trip to the ER, Leland was sent home on hospice. It was then that the family decided to move up their timeline.
Although the next morning happened to be Halloween, in the Campbell household, it was time for the magic of Christmas. Together, they put up their Christmas tree, changed into their pajamas, and watched as Aubrey opened up her presents and excitedly showed them off to her little brother.
Later that evening, after enjoying trick-or-treating (Leland donned a shark costume for the occasion), the entire extended family piled into the living room to watch a Christmas movie. Slowly, Leland began to fade. Matt, Leigha, and Aubrey said goodnight to the rest of their family before curling up next to each another on their bed for one last night of cuddles together.
By morning, Leland had passed away — safe, comfortable, and in the presence of his mother, father, and big sister.
“It was a very, very peaceful night,” Campbell says, her voice breaking. “I feel like we did our very best.”
When asked whether there was any way people could support her family financially, she shook her head no:
“Humanity has been so good to us,” she says. “We have been so thoroughly supported by the human race since he was born; it’s absolutely staggeringly, humbly wonderful.”
Instead of donations to her family, Campbell hopes that anyone moved to help will donate to the Ronald McDonald House Charities, which enabled her to stay right next to her son during the “scariest” moments. Campbell is determined to do everything she can to support other families like hers, from speaking about her son and sharing his story, to eventually starting a nonprofit organization that will allow families of terminally ill infants to create memories together with their own #MissionAlive.
Because ultimately, as Campbell described in the eulogy she wrote for her son, the time they had together was about so much more than a single experience; it was about living fully in each and every moment.
“Mission Alive is not about how we die,” she says. “And it’s not about going places. It’s not about life in panic mode. It’s about slowing down. Choosing today. Choosing life.”
If you wish to learn more or offer support to #MissionAlive, visit Leland’s Mission Alive.