An 11-month-old infant from Rockwall, Texas, born with an exceptionally rare condition that left his face split in two, is preparing for a series of life-changing surgeries. The procedures are designed to reconstruct his facial features and, for the first time, allow him to eat and breathe without medical assistance. For Brody Shain and his family, this is just the beginning of a long road, and their story shows the incredible challenges that come with treating severe birth defects of the head and face.
Two Rare Conditions at Once
Brody was born with two severe birth defects that are linked. The first is a rare kind of midline facial cleft, which is much more complicated than a typical cleft lip. While a common cleft shows up on the sides of the upper lip, Brody’s condition happened because the two halves of his face didn’t join together in the middle as he was developing before birth. This left a wide gap where the center of his upper lip and the tip of his nose should be.
On top of that, he also has an oral encephalocele. This is a birth defect that occurs when the brain and spinal cord don’t fully close during early pregnancy.
For Brody, this meant he was born with an opening in his skull, and brain tissue pushed through it, creating a sac in the roof of his mouth. This is not only dangerous for his brain but also gets in the way of the area that needs to be surgically repaired.
Because of these issues, Brody can’t do basic things like eat or breathe on his own. The opening in the roof of his mouth keeps him from being able to suck, which can cause him to choke or get milk in his lungs. The problems with his facial structure also block his airway, making it impossible for him to breathe without help. Since birth, he’s been on a feeding tube and needs extra oxygen. His mother, Brandy Shain, had to leave her job to give him the constant, specialized care he needs, which put a huge financial strain on their family of six. To cover the $15,000 cost for just the first surgery, their community started a GoFundMe that raised more than its goal, with the extra money being saved for his future operations.
A World-Class Surgeon and a Multi-Stage Plan
Brody is in the care of Dr. Jeffrey A. Fearon, the director of the Cleft & Craniofacial Center at Medical City Children’s Hospital in Dallas, one of the top centers in the country for these conditions. Dr. Fearon is a Harvard-trained surgeon who focuses only on treating rare birth defects in children, unlike many surgeons who also perform adult cosmetic surgery. He has done surgeries like Brody’s a dozen times before—an expertise few surgeons in the world have for this specific problem.
The center uses a team of different specialists, which is the best way to handle complex cases. This means experts in neurosurgery, orthodontics, speech therapy, and ear, nose, and throat (ENT) all work together on Brody’s health. His treatment won’t be a single event but a long journey with several planned stages over many years.
- Stage 1 (Neurosurgical Repair): The first step is to fix the encephalocele. A team of neurosurgeons and plastic surgeons will operate to gently move the healthy brain tissue back into his skull and close the opening. This is a crucial step to remove immediate risks, like meningitis, and to create a solid foundation for the work on his face. A successful surgery here is the first major milestone toward helping him breathe and eat on his own.
- Stage 2 (Facial Unification): After he recovers, Brody will have another major surgery to fix the opening in his face. In this procedure, surgeons will make careful cuts in the bones of his face to bring the two halves together in the middle. They will use plates and screws to hold the bones in their new position and then repair the soft tissue of his nose and lip to close the gap. This is the main surgery that will bring his face together.
- Subsequent Stages: Dr. Fearon expects Brody will need another three to four smaller operations as he gets older. A child’s face grows and changes so much, so these later surgeries will be needed to keep his face symmetrical and working properly. They will likely focus on improving the look and function of his nose and lip, dealing with scar tissue, and making other adjustments to his facial bones as he grows into a teenager.
Even though the journey is tough, the outlook is positive. “I believe his prognosis is quite good,” Dr. Fearon has said publicly. This is likely because of where the encephalocele is located and because Brody doesn’t have other major health problems.
The Family’s Side of the Story
For families like the Shains, a rare medical diagnosis is about more than just surgeries and hospital visits. The financial strain can be crushing. Even with health insurance, out-of-pocket costs for copays, deductibles, and treatments that aren’t covered can quickly add up to thousands of dollars.
But the bills don’t stop there. Often, one parent has to quit their job to become a full-time caregiver, which means a sudden loss of income. And because the top specialists are usually in just a handful of major cities, families often have to travel far from home, paying for their own gas, hotels, and food—costs that insurance almost never helps with.
The emotional cost is just as heavy. Parents are hit with the shock of the diagnosis, followed by the constant worry of seeing their child through risky surgeries. Life for the whole family gets turned upside down. Siblings can feel left out or scared, and as children with facial differences grow up, they can struggle with feeling different, making a strong support system at home and in the community absolutely vital.
A Different Way to Help: What Families in Crisis Wish You Knew
When someone is facing a medical crisis, knowing how to offer support can be tough. But even with the best intentions, some actions can add more stress. Here’s what families often find most helpful.
- Offer specific, low-pressure help. Instead of a vague “let me know what you need,” try something concrete: “I’m dropping off dinner for you on Tuesday.” This takes the mental load of delegating off their shoulders. Also, adding a simple “no need to reply” to a supportive text lets them know you’re thinking of them without adding pressure.
- Provide a distraction, not advice. Families in crisis are surrounded by medical talk. Offer a break from it all by talking about a new movie, a favorite TV show, or just a funny story. They have a team of medical experts; what they often need from friends is a sense of normalcy. Unsolicited medical advice, even when well-intentioned, usually adds more stress.
- Tackle the “invisible work.” A crisis involves endless behind-the-scenes tasks. Offer to handle one of these, like coordinating updates for a wider circle of friends, researching takeout places near the hospital, or organizing a simple meal train. Taking one small logistical task off their plate can be a huge relief.
The Road Ahead for Brody
For Brody Shain, the first surgery is just that—the first step. The road ahead is long, filled with more procedures, years of follow-up care, and a lot of strength from his family. The goal, though, is straightforward: to give Brody the chance to live like any other kid, able to eat, breathe, and play without being attached to tubes and machines.
The money his community raised did more than just cover a medical bill; it gave him a shot at that future. That support, paired with a top-tier surgical team, is what makes this kind of incredible change possible. In the end, Brody’s story isn’t just about advanced medicine. It’s about what happens when a community wraps its arms around one of its own and refuses to let go.
Featured Image Source: Jody Crocker’s gofundme for Brandy Shain
