Willie Brown can’t say much, but he shares love and joy as well as anyone.
Concerns about Willie’s health were first raised during a routine ultrasound when his mom, Terasa, was 19 weeks pregnant. The doctor noticed that his arms and legs were short. They kept an eye on things but didn’t realize the severity of his condition until he was born at a community hospital. He was immediately flown to CHoR and was cared for in our NICU for his first three months.
During Willie’s NICU stay, our team diagnosed him with Jeune syndrome, a rare genetic condition that affects the growth of bones and cartilage. It’s characterized by a small chest and ribcage that limit lung development and breathing. As a result, Willie is dependent on a ventilator and he relies on his Vertical Expandable Prosthetic Titanium Ribs (VEPTRs), curved metal rods that create more space in the chest for the lungs to expand and grow. Willie’s Jeune syndrome also comes with blindness, dwarfism and renal failure.
Thankfully, Willie was in the right hands at CHoR. Not only did he receive an accurate diagnosis and life-saving care in the NICU, but a team of pediatric experts came together to ensure this coordinated care continued following discharge and as he got older. One of these providers is his general pediatrician, Dr. Tiffany Kimbrough, who leads our Complex Care Clinic to help kids with complex medical conditions, like Willie, and their families. All communication flows through the pediatrician at the center, so care is personalized, understandable and seamless.
“Dr. Kimbrough has been an absolutely amazing doctor to my son. It seems like he is her only patient even though I know he’s not, and she even has children of her own. She’s always checking in to make sure we’re okay. She’s always there,” said Terasa.
To Dr. Kimbrough, it’s all part of making sure Willie, who also goes by Bubba, and his family are happy and thriving.
“Bubba is a really special kid with a rare form of skeletal dysplasia. That doesn't stop him from getting the most out of life. He loves BIG and is such a joy to his family and those who know him,” she said. “I love working with his family to help clarify and optimize goals for his care to meet his medical needs. No two kiddos are alike with their health care journeys and there is no better example of this than Bubba. I am honored to be a part of his health care team.”
Because breathing is one of the greatest areas of concern for Willie, he has regular appointments with his pulmonologist, Dr. Michael Schechter. Terasa appreciates not only Dr. Schechter’s calm confidence in providing the best care for Willie, but also his sense of humor and that it’s easy to talk to him. The nephrology team is also essential in managing his kidney function. Willie comes to the Children’s Pavilion for dialysis three days a week and has grown quite fond of his nurse, Anna, too.
“We love Anna to death,” said Terasa. “She’s really gotten to know Willie and learn what’s normal and not normal for him. I love that about her.”
Another key member of the team is Marisa Cosco Taylor, Willie’s social work case manager through CHoR’s Central Virginia Care Connection for Children. Marisa has been working with the Brown family since Willie went home from the NICU and is their go-to person for organizing appointments, gaining equipment and coordinating any other resources they may need.
“I’ve seen Willie make enormous leaps and bounds since 2018. He has come SO far from a fragile baby to a smiley toddler who is making such developmental strides,” said Marisa. “He is truly an inspiration to me – and so is Mom. She has grown with Willie and is the most amazing mom and advocate for him. Her passion and positive outlook inspire me.”
While there are a couple things Willie doesn’t like – namely too many kisses and getting his teeth brushed – there are many others that bring out his signature smile. He loves music, lying down, rolling around and spending time with his three big sisters, who love him right back. It’s no surprise that the one word he does say is “sissy.”
In addition to his regular medical care, Willie does physical and occupational therapy at our Petersburg Therapy Center. He’s working on learning to sit on his own and practicing at home with his sisters.
“Phenomenal, exceptional – I feel like they truly take pride in what they do,” said Terasa about the CHoR team that’s come together to care for Willie. “They always think about not just the patient, but the parent as well. I would not choose any other place to go when it comes to my son’s care.”
Terasa also urges parents to be their children’s number one cheerleader.
“You have to do what’s best for your child and keep pushing forward,” she said, always inspired by her son. “I’m so proud of how happy and strong Willie is. I can’t imagine going through half the things he has gone through and for him to keep smiling astonishes me.”
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