March 30, 2021, was the second best day of our lives. The first best day, of course, was the day his big brother Graham was born. Wellston Hayes Varney was our rainbow baby—our miracle after the storm. He arrived at 37 weeks, weighing a big 4 pounds 4 ounces and measuring 18 inches long, ready to make his mark on the world.
From the very beginning, Wellston’s journey was full of fear and uncertainty. At just 24 weeks, I was diagnosed with severe IUGR—Intrauterine Growth Restriction—a condition where a baby doesn’t grow as expected in the womb. The reasons can range from placenta issues to genetic factors, and complications can be serious. We immediately pursued genetic testing, which thankfully ruled out any underlying issues, but no one could explain why this was happening. I had had a healthy pregnancy just a year before, and doctors suggested it might be due to my body not fully recovering from a short-interval pregnancy.
By 28 weeks, we were told Wellston could arrive at any moment if necessary. He remained in the negative first percentile for growth until 37 weeks. From that point on, my pregnancy became a rollercoaster of emotions. I attended 2–3 appointments each week, constantly monitoring him, prepared for the possibility of an early delivery. By God’s grace, he held on until 37 weeks exactly.
On March 30, 2021, Wellston made his grand entrance. And oh, what an entrance it was! He truly has always been on his own schedule. I remember our incredible nurse announcing, “Molly, Wellston is here!” while frantically calling my doctor, who was on special call for us. Wellston decided he was ready, regardless of anyone else’s plans. Seeing the NICU team and doctors rush in was terrifying, but by God’s grace, I got to meet him immediately—a moment of pure bliss I will never forget.
Hearing his first cry, seeing his tiny chest rise and fall, and watching his daddy tear up because our son had arrived healthy—it was a moment I had longed for. Wellston did amazingly in those first few days. He held his temperature, his sugar levels were stable, and he seemed so strong for a baby born preterm. But by day three, he had to be admitted to the NICU after his temperatures began to drop. We spent almost a week and a half there, and through it all, he fought with everything he had. Bringing him home to meet his big brother Graham, who was just one at the time, was a moment of overwhelming gratitude and joy.
But Wellston had more battles ahead. Just days after returning home, he became lethargic, refused to eat, and suffered severe diarrhea and acidosis. His color turned almost gray. We rushed him to the ER, and what happened next is forever etched in my memory. Nurses immediately took him to trauma, and I was left alone, terrified, wheeled into the room where my tiny 3-pound, 11-ounce son lay surrounded by doctors. As a parent, feeling so helpless is indescribable—a living nightmare I would never wish on anyone.
On April 14, 2021, Wellston was admitted to Nationwide Children’s Hospital with severe acidosis, dehydration, failure to thrive, acute kidney damage, a blood infection, coronavirus (not COVID-19), and hypothermia. He spent the next two months in the NICU, isolated to maintain his temperature and support his growth. Despite every intervention, he continued to suffer from severe diarrhea. Multiple formulas and countless treatments provided no answers. Heartbreak, fear, and helplessness became our daily companions. My husband and I would often come home crying, frustrated by the unknown, desperate for a diagnosis.
Finally, on August 2, 2021, we received a life-changing answer. Wellston was diagnosed with Trichohepatoenteric Syndrome (THES), a congenital, rare, and severe genetic condition affecting approximately 1 in 1,000,000 children. Worldwide, fewer than 100 cases have been reported. Wellston’s specific mutation, SKIV2L, is among the rarest and most severe forms of THES, bringing immune deficiencies, liver complications, and resistance to vaccines.
THES is life-altering. Children often face early-onset, life-threatening diarrhea, failure to thrive, immune disorders, and growth restrictions. Treatment involves total parenteral nutrition (TPN) and IGG infusions, and there is no cure. Wellston is the first child diagnosed with THES at Nationwide Children’s Hospital, making his journey unprecedented. Every virus is a serious threat, even something as simple as a cold. Navigating this during a pandemic has been terrifying, but it has also shown us the strength and resilience of our little warrior.
Through this journey, I have learned that being a parent isn’t about having perfect children; it’s about loving them fiercely and advocating for them tirelessly. Wellston has taught us patience, humility, and gratitude. Every milestone, no matter how small, is a victory worth celebrating. My husband and I face each challenge hand-in-hand, balancing the care of our sweet, healthy Graham while fighting for Wellston’s survival. The fear, exhaustion, and heartbreak are immense, but so is the love.
Meeting other moms of children with THES has been a blessing. They’ve helped me mourn the life I imagined, while embracing the one we have. Wellston may not run in a baby pool with his brother or have a typical childhood, but he has a family who will fiercely protect, love, and celebrate him every day. Being his mom may look different than I expected, but it is still the greatest honor of my life.
I never stopped advocating for Wellston, researching tirelessly, and trusting my instincts as a mother. Every night spent learning, questioning, and fighting for him was worth it. He has not only survived but inspired us and countless others. Wellston is a warrior in every sense, proving daily that miracles do exist.
Our journey is far from over, but our love, faith, and hope guide us forward. Every small triumph is monumental, and every setback a reminder of how precious life is. Wellston may be one in a million, but he has already made an impact far beyond what I ever imagined. Through his strength, we are learning to cherish every moment, celebrate every victory, and face every challenge with courage and love.
Wellston Hayes Varney, our tiny warrior, has shown us the true meaning of resilience, love, and hope. And as long as God wills, we will continue this journey together—hand in hand, heart to heart, never giving up, always celebrating the miracle that he is.
