BORN WITHOUT A DEVELOPED NOSE, BABY VINCENT IS THRIVING WITH ONE OF THE WORLD’S RAREST CONDITIONS

A 20-Week Scan Raised Difficult Questions

Madeline Taul’s pregnancy seemed healthy until a routine ultrasound at 20 weeks revealed an unexpected concern. Doctors noticed that something appeared to be missing from the facial area of her unborn son, Vincent.

The discovery left Madeline and her family facing an uncertain future. Doctors were concerned about how Vincent would breathe after birth, but they could not give the family a definitive diagnosis before he arrived.

As the pregnancy continued, the medical team prepared for different possibilities. Specialists gathered around the delivery room, ready to respond to any complications Vincent might face in his first moments of life.

For his parents, the waiting was frightening. They knew their baby might need immediate medical support, but they could not yet know exactly what his condition would mean for his future.

A Cry That Brought Relief

When Vincent was born, the room was filled with medical professionals prepared to help him. Then Madeline heard something she had been hoping for: her son cried.

That first cry brought enormous relief. Nurses briefly held Vincent up so his mother could see him before taking him to the neonatal intensive care unit, where doctors could assess his breathing and overall health.

After birth, Vincent was diagnosed with Bosma arhinia microphthalmia syndrome, commonly known as BAM syndrome. It is an exceptionally rare genetic condition that affects fewer than 100 people worldwide, according to Norton Children’s.

The syndrome is associated with the absence or severe underdevelopment of the nose. It can also involve eye abnormalities and delayed or absent puberty. The effects vary, and each child needs an individualized medical care plan.

32 Days in Intensive Care

Vincent spent 32 days in the neonatal intensive care unit at Norton Children’s Hospital in Louisville, Kentucky. His care involved multiple specialties, including genetics, endocrinology, ophthalmology, surgery, cardiology, pulmonology and oral and maxillofacial surgery.

Because BAM syndrome is so rare, coordinating his care was especially important. The medical team worked together to monitor his health and address the different challenges associated with the condition.

Vincent uses a tracheostomy tube to help him breathe and a gastrostomy tube to receive nutrition. With help from a feeding therapist, he has also begun feeding by mouth.

His mother had worried that the family might need to travel out of state to find the specialized care he required. She was grateful that the hospital’s team could provide much of his care close to home in Louisville.

Making Progress One Milestone at a Time

Despite the challenges of his diagnosis, Vincent has been making encouraging developmental progress. His neonatologist, Dr. Kayla N. Evans-Judd, said he was growing well and reaching important milestones.

His family has played a major role in supporting his development. Madeline has worked closely with the medical team to help Vincent receive the care he needs while giving him a loving home environment.

His progress does not mean that every medical challenge has disappeared. Vincent continues to need specialist follow-up and support with breathing and feeding. However, the hospital reported that he was happy, growing and thriving after returning home.

For his parents, each step forward matters. Their focus is on helping Vincent grow, develop and enjoy childhood while ensuring that his medical needs are met.

Looking Toward the Future

Vincent may be considered for nasal reconstruction surgery when he is around five years old. Until then, his care team is concentrating on his overall health, growth and development.

Although BAM syndrome is extremely rare, Norton Children’s explains that children with the condition typically have normal intelligence and can live full, happy lives. Vincent’s future will depend on his individual needs and continued care.

His story is a reminder that a rare diagnosis does not define an entire childhood. With coordinated medical support and a committed family, Vincent is making progress at his own pace—one milestone at a time.

Source: Norton Children’s, “Norton Children’s helps child thrive despite rare diagnosis,” October 15, 2025; updated November 3, 2025.