From our daughter Brittany-   

Our journey with Hirschsprung’s disease has been filled with overwhelming twists, each more heart-wrenching than the last. The moment our son came into the world, we felt a rush of joy and relief—he seemed healthy, and he even passed his first meconium, which is rare for babies with Hirschsprung’s disease. We thought we were in the clear. But, just as we were packing to go home, everything changed. He suddenly vomited green, and a knot of fear tightened in my chest.
 

Doctors immediately took him for an emergency X-ray, revealing severe stomach swelling. Within minutes, he was being rushed to the NICU by ambulance. Watching him be taken away without being able to accompany him was one of the most gut wrenching experiences of our lives. 

The next day in the NICU, doctors performed a rectal biopsy and told us he didn’t have Hirschsprung’s. We were relieved but couldn’t shake the feeling that something wasn’t right. A day later, they told us the initial results were wrong, and someone had misinterpreted them. It was as if the floor had fallen from under us. As parents, you trust medical experts with your whole world, and this roller coaster shook us to our core.

Our son spent his first 10 days in the NICU, and ever since, our lives have revolved around his care. With the correct training I was able to take my baby home for the first time since the chaos of his birth. We have been doing rectal irrigations at home to help him go to the bathroom, as the issue with Hirschsprung’s is Tavius is unable to evacuate his bowels on his own. Each time we did knowing it was uncomfortable for him but necessary to avoid life-threatening complications.

Now, at just 3 months old, he’s endured his first major surgery—a Duhamel Endorectal Pull-Through—on November 6. Watching him go through this was agonizing. He woke in so much pain, his little face crumpling with every movement. Two days post-op, we were hopeful, but then he couldn’t urinate. Having a foley catheter inserted was heartbreaking; it was one more discomfort he had to endure. On the Friday after his surgery, his stomach became distended, requiring emergency irrigation, a rectal tube, and a nasal tube to release air from his stomach. All of the tubing stayed in for three days. I have never prayed so hard in my life for anything, as I did for my son to heal without further invasive measures like I did this last week. Each intervention felt like another piece of his childhood slipping away too soon.

We’re now past the expected 5-7 day recovery period, but each day blurs into the next as we wait for any sign that we can take him home. Home, where we can all be together, where he can rest in his own crib, where maybe, just maybe, he’ll feel some comfort.

One of the toughest parts of this recovery is the constant, acidic bowel movements that came as a side effect of the surgery/disease. Because his digestive system is still adjusting, he’s passing stool almost constantly. This has turned every diaper change into a heartbreaking ordeal. His stools are so acidic that they quickly cause painful rashes and sores on his skin, making him cry out in agony with each change. This means we need a very expensive special rash cream, a lot of it, and a constant stream of fresh diaper changes. Watching his tiny body endure this level of discomfort is something no parent should ever have to see.

The financial burden of his recovery is growing each day, and the costs are overwhelming. But each diaper and each tube of cream are necessary to give him even a small degree of comfort through this painful recovery.

Beyond the financial and physical toll, there’s a deep ache in our hearts. One in five thousand babies are born with Hirschsprung’s disease, yet it’s still so misunderstood and unknown. There is no cure—only management. And this is just the beginning of a lifelong journey. Despite all the struggles, our son’s resilience continues to shine through, reminding us of the strength within him—and within us—as we navigate this journey together.

Please consider donating to help us cover the extreme amount of diapers and cream our brave little warrior requires. Every cent towards another pack of diapers will be deeply appreciated. Most importantly, we want share awareness of this disease. Every bit of help brings us closer to giving our son a chance to simply be a child, to find comfort, and to grow up with fewer struggles. Due to his need for constant care, I have been unable to work and all the financial needs weigh heavily on Tontae. We can’t thank you enough for being a part of his journey and appreciate any assistance you are able to offer. 

We are grateful for everyone’s support. 

Pre-op

Post op