A father bravely shares the story of his terminally ill daughter’s birth. Imagine receiving the devastating news during the 19th week of pregnancy that the child your partner is carrying has a critical condition, such as having no brain. As you grapple with this heartache, you somehow muster the courage to ask the physician, “If we carry her full term, can her organs be donated?” This is the reality faced by Mark and Laura Smith, who chose to follow through with that painful journey.
Upon learning that their daughter, Mia, would be born with anencephaly, Mark was taken aback by Laura’s immediate question about organ donation. As the weeks of pregnancy progressed, his admiration for her strength only deepened. After Mia was born, Mark took to Medium to articulate the mixed emotions surrounding the experience. “It’s strange to say that one of the worst experiences of my life also turned out to be one of the most profound moments I’ve ever encountered,” he expressed.
The Diagnosis
During a routine ultrasound at the 19th week, the Smiths discovered that Mia had anencephaly, meaning she would be born without a brain. Committed to Laura’s wish to donate Mia’s organs to those in need, they resolved to see the pregnancy through. “We had plans, backup plans, and more backup plans,” he wrote. “I wanted a concrete outcome. I longed to meet and embrace the person my daughter would help … I couldn’t imagine what Mia might have become, but I could envision the impact she could make.”
A Heartbreaking Reality
The path ahead was undoubtedly challenging, yet even Mark was unprepared for the harsh reality that awaited them. “Laura often says, ‘You think you know, but you have no idea.’ Until you walk that path yourself, you truly have no understanding. Yet, we felt empowered by our choice to be Mia’s parents for however long we could.”
Their decision was selfless, but the heartache was profound when Mia’s heart failed before she could draw her first breath. “The ultimate blow was that we wouldn’t even get to see her alive,” Mark lamented. Their hopes of donating Mia’s organs seemed to vanish. “We anticipated the pain of losing her, but we also had hope in the difference she would make. We received encouragement from organ donation recipients, but then everything changed. It felt like we were letting everyone down,” he reflected, feeling a mix of embarrassment and disappointment as their plans unraveled.
A Silver Lining
Fortunately, amidst the sorrow, a silver lining appeared. On the day Mia was born, LifeShare Transplant Donor Services of Oklahoma reached out to inform them that a match had been found for some of her organs, specifically for her eyes. “It wasn’t what we had envisioned or hoped for, but it was precisely what we needed in that moment,” Mark shared, as he and Laura embraced the happy tears that flowed.
Although it wasn’t the outcome they had initially dreamed of, it was a meaningful development. Mia was set to make a significant impact, being the first person in Oklahoma to donate two whole eyes. Because of her, LifeShare established connections with other states to facilitate future eye transplants. They even created an infant organ donation plan, dubbed the “Mia Protocol,” which is now shared among various organ procurement organizations across the country.
Finding Hope
Despite their unimaginable grief, the family found something to celebrate. And for Mark, the dream of one day looking into his daughter’s eyes remained alive. “I can never hold her again, nor hear her laugh. But I can imagine the moment I finally gaze into her eyes and see what color they are.”
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Summary
Mark and Laura Smith faced the heartbreaking reality of their daughter Mia’s terminal illness during pregnancy. Despite the pain of knowing they would not see her alive, they chose to donate her organs to help others. Their journey, filled with mixed emotions, ultimately led to impactful outcomes, including the establishment of the “Mia Protocol” for infant organ donations.