A high-pitched ding caught Rowan Lambert’s attention – it was the oven in her play kitchen letting her know that a pretend cupcake was ready to serve. Rowan, 4, who was wearing a sparkly princess dress and oven mitts for safety, proudly brought the cupcake to her mother, Kristen.
When Kristen was pregnant with Rowan, her second pregnancy, there was an undertone of anxiety. Despite several obstetric and gynecology appointments and a few nerve-racking ultrasounds, Rowan was born with no obvious medical concerns.
At her one-month check-up, the pediatrician noticed that the cone shape in Rowan’s head, which usually goes away within 3-4 weeks, was still noticeable. Rowan’s fontanelle (the soft spot on top of a baby’s head) was higher up than usual and the bones in the front of her skull had fused. Genetic testing showed that Rowan had Crouzon syndrome, a genetic condition that causes craniosynostosis, or a condition in which the bones in a baby’s skull fuse too early and affect the shape of their head.
For Kristen and her husband, Jason, the diagnosis was completely unexpected. “Our hearts sank initially,” said Kristen, who has been a nurse at Mass General for Children (MGfC) for almost 17 years. She knew that MGfC’s team-based approach was what Rowan needed.
“Children like Rowan and families like the Lamberts are the reason caring for children is so fulfilling,” said Ann-Christine Duhaime, MD, senior pediatric neurosurgeon at MGfC who provided all of Rowan’s early neurosurgical care, along with Curtis Cetrulo, MD, an attending surgeon in Plastic and Reconstructive Surgery at MGfC and Massachusetts General Hospital. “First, Rowan has a sparkle and zest for life about her that never dims no matter what she has to go through for her medical care. She is always ready with the biggest smile! And her parents are wonderful advocates, observant caregivers and full members of the team that pulls together to give Rowan what she needs as she grows and develops, even when there are scary decisions to be made.”
Babies with Crouzon syndrome often have a multitude of medical concerns and require care from several specialists. “Even before I had Rowan, I got to know a lot of the specialists and I could see how the care at MGfC is more individualized,” said Kristen. “There’s a personal touch. For example, the front desk staff in Pediatric Neurosurgery always remembers us and knows us when we call. It’s those little personal touches that make the difference.”
For Rowan, she had obstructive sleep apnea and failure to thrive (when a baby’s weight or rate of weight gain is significantly behind those of babies who are a similar age and sex). In her first few years of life, she had three surgeries on her skull to make sure the bones in her face and her brain could grow and develop. A tracheostomy, placed when she was 18 months old, have helped Rowan with her growth and obstructive sleep apnea.
“Before she had the tracheostomy, she wasn’t growing at all,” said Kristen. “Once it was placed, she blossomed.”
The decision to place the tracheostomy was not an easy one. “Rowan’s family struggled with this decision. They asked very appropriate questions and voiced their concerns and fears, but in the end, I believe, they were happy with the decision made,” said Christopher Hartnick, MD, chief of Pediatric Otolaryngology and director of the Pediatric Aerodigestive Center at MGfC and Mass Eye and Ear. “These are always such difficult and deeply personal decisions.”
Now a sweet and kind-hearted preschooler, Rowan is reaching all her milestones. At school, she receives physical therapy, occupational therapy and speech therapy, and has a one-to-one nurse to help with her tracheostomy.
“She doesn’t let Crouzon syndrome affect her at this age,” said Kristen. “We don’t keep her from doing anything. We want her to see that she can do everything that other kids can do. The only thing she cannot do is swim because her tracheostomy cannot be submerged.”
Photos courtesy of Kristen Lambert. Mass General for Children and Massachusetts General Hospital do not endorse any of the brands listed on this story.