The Igbo and Yoruba proverb, “It takes a village to raise a child” has been in use for centuries and remains in use across languages and cultures due to its continued relevance.
For Amber-Joi Watkins, her husband, Tommy Domalski, and their daughter, Céline, that village includes family and friends, as well as Céline’s pediatrician, her care team at Children’s Hospital of Philadelphia (CHOP), her physical therapy team, and her friends at Cure SMA. When it became clear that Céline wasn’t meeting milestones typically seen in babies her age, this team was formed and has since changed the course of her life.
“I’m a very active person and began to take Céline to ‘Mommy and Me Yoga’ when she was a few months old. That’s where I started to notice that she wasn’t moving like the other babies. She couldn’t hold her head up, kick, roll, and do tummy time activities,” said Amber-Joi.
Sharing Concerns
At Céline’s three-month pediatrician appointment, Amber-Joi brought up her concerns. “The nurse practitioner put her on tummy time, and she lifted her head,” shared Amber-Joi. The nurse practitioner said, “Because you’re her mommy, she’s probably not going to lift her head for you.” She told Amber-Joi, “There’s nothing to worry about. She’s doing fine.”
When Céline went back to the pediatrician’s office for her six-month appointment, things began to change.
“We saw a different doctor within the practice, and Céline had at that time regressed in her strength. The practitioner noticed the signs of SMA. Céline had a tongue quiver, which is common with SMA, and she couldn’t really sit up at the time and still wasn’t rolling or kicking. Her low muscle tone was very evident, and I was told she needed to start physical therapy right away.”
Céline’s pediatrician also helped her get an appointment the next day with Neurology at CHOP. Amber-Joi said, “We saw Brenda Banwell and Vanessa Battista, who does work with Cure SMA.” Right away, they had blood work taken so they could diagnose Céline.
“This was the week before Christmas, so it was hard to get anything done. The lab technician knew the last truck had already arrived to pick up blood samples. He ran and caught the truck so Céline’s blood could be sent in for analysis.” About one week later, Céline was diagnosed with SMA Type 1, and six weeks after that she was approved and began to receive gene therapy at CHOP.
Meeting Milestones
Today, Céline is meeting her milestones and surpassing the concerns around her initial diagnosis. Amber-Joi said, “We were warned that she would probably never walk or crawl, but that her outlook would be better than the traditional outlook, which was two years of life. So that gave us some hope, but it was also a strange and scary time.”
“My husband and I took the information we were given, but we wanted to do more than give our daughter medication and wait. Being the active people we are, we wanted to start Céline on a physical therapy right away, so that’s what we did.”
Amber-Joi and her husband also worked to help Céline make progress at home on her strength and mobility. They did water therapy and play in the bathtub and got Céline moving as much as possible. They also seek out childcare support that reinforces these efforts, specifically seeking out nannies in school for physical or occupational therapy that understand and reinforce the importance of movement.
“We work on motivating Céline while having fun to ensure her muscles don’t atrophy further and allow her to rebuild some of her strength. We’ve had a lot of luck and great outcomes because she walks, crawls, goes to school without a caretaker, and more than anything else, is just a happy child.”
Currently, Céline is starting a new school year and is even in dance class. Amber-Joi said, “We don’t let SMA stop us from anything.”