Above: The Hartford family turned to MGfC for their care, which has helped Keaton (left) and Grady (right) thrive. Photo courtesy of Candice Hartford.
Since 2009, Candice Hartford, RN, has cared for Mass General for Children’s (MGfC) tiniest patients as a nurse in the Neonatal Intensive Care Unit (NICU). When her twin boys, Grady and Keaton, were born in 2015 at 33 weeks and five days, they were transferred to the NICU, where Candice’s colleagues cared for them.
“That three weeks in the NICU was a magical time,” said Candice, of Cohasset, Mass. “All of my coworkers could be with them, and my husband could see what I do for a living.”
After being discharged from the NICU, Grady and Keaton were enrolled in Early Intervention and referred to the Newborn Developmental Follow-Up Clinic at MGfC, which provides services to at-risk infants from birth to age 2. At their 12-month well visit with their pediatrician, Candice noticed that Grady and Keaton were behind on their developmental milestones. She started to suspect that both boys may have autism spectrum disorder (ASD), a developmental disability that affects a person’s communication skills, ability to interact with others, behavior and learning.
Candice’s motherly instincts were correct. Grady was diagnosed with ASD at 17 months. By the time he was 2, he was enrolled in Applied Behavior Analysis (ABA), a type of therapy used in children with ASD to improve their communication, social and motor skills, for 25 hours a week. Shortly after Keaton turned 2, he was also diagnosed with ASD.
Getting an early diagnosis of ASD is crucial in ensuring people with ASD receive the services and care they need. In the United States, about 1 in 36 children have ASD. “For babies who have ASD, the symptoms do not always manifest right away,” said Paul Lerou, MD, chief of Neonatology and Newborn Medicine at MGfC. “That leads to a delay in diagnostic workup and in accessing the people and services needed.”
After her boys were diagnosed, Candice felt alone and was nervous about their future. She confided in Joanne Henningsen, RN, who is also a nurse in the NICU at MGfC. “I told her it’s important to find your people, whether that’s in your community, through support groups or by taking part in different activities,” said Henningsen. “Everyone who has a child with autism gets it. They know what life is like. They’ve been in the same boat and navigate life through that unique perspective.”
Her people, as it turns out, were working right alongside her. As the boys grew up, Grady continued to be nonspeaking and Keaton was diagnosed with attention-deficit hyperactivity disorder (ADHD). Both boys also struggled with sleeping through the night. Candice knew she could count on the MGfC community to get her boys, now age 7, the care they needed.
At age 4, Grady and Keaton were referred to the Lurie Center for Autism at MGfC and Massachusetts General Hospital where they met Ann Neumeyer, MD, the medical director of the Lurie Center. “When I was in virtual visits with Dr. Neumeyer, she really took us under her wing and went through all the data with us,” said Candice. “Everyone at MGfC listens to us. I wanted to be the parent and for someone else to be the doctor. Our voices are heard, and I know I can speak up if I need to.”
The Lurie Center team takes a holistic approach to patients and their families. “We care for the whole person. With providers from multiple specialties, including family resource specialists, social workers and an education consultant, we help to give the best care and find the best program for a child,” said Neumeyer. “In addition to the medical and behavioral challenges of autism, we help educate families to understand autism and to advocate for themselves and for their children. We also educate primary care providers on how to better care for children with autism.”
The Lurie Center also has an innovative perspective on assessing people with ASD when they are seen in-clinic or through a virtual visit. “Children with ASD may express their symptoms differently, especially if they’re nonspeaking or don’t use expressive language. Expressions of pain and discomfort are often more behavioral, and it’s common for people to attribute the behavior to autism,” said Harland Winter, MD, director of the Pediatric Inflammatory Bowel Disease (IBD) Center at MGfC, who cared for Keaton and Grady in 2021 for bouts of constipation and acid reflux, respectively. “We look for conditions that may explain the behavior rather than attributing the behavior to autism. We want to see if anything may be triggering that behavior and explore how we can treat it.”
Grady’s acid reflux caused discomfort while he was laying down, making sleep a challenge. For Keaton, a sleep study showed that he was at risk for seizures. Both boys also had respiratory issues. Sleep issues in general, however, are common in people with ASD. “Children with ASD often go to bed at a typical bedtime, but then they’re up for the day at 1 a.m. or 2 a.m.,” said Bernard Kinane, MD, chief of Pediatric Pulmonary and Sleep Medicine at MGfC. “If you’re the parent, maybe you’ve gone to bed around 11 and then you’re up with the kids after 2-3 hours of sleep. It’s not sustainable.”
After multiple trials of various medications, Kinane found a combination that worked for both boys. “The first goal was getting Grady and Keaton to sleep. Once we got the medication squared away, we paused to take a breath before we addressed their other issues,” said Kinane. “Once the boys were sleeping better, everyone settled into their daily routines. We could then address their respiratory issues.”
In the post-pandemic world, Keaton and Grady are thriving amid their initial setbacks when the pandemic started. “Keaton has made a lot of progress with his language development, and he’s done much better since attending school in-person,” said Neumeyer. “He has some challenges with attention, but it’s common for attention issues to become more noticeable when children are older and expected to sit still more.” He also takes medication to keep seizures at bay.
“Keaton’s language has progressed so much. He’s a great reader and he can tell you every car on the road,” said Candice. “Grady is non-speaking, but he communicates his needs through an Augmentative and Alternative Communication (AAC) device and through gestures. He is funny, charming and brings joy to everyone around him. Both boys attend the South Shore Education Collaborative in Hull.”
Candice has also taken a pay-it-forward approach. In early 2020, Candice organized a small playgroup with families whose children also had ASD. It was a fulfilling opportunity for Candice to meet other families with similar experiences and for the twins to connect with children their age. So when the COVID-19 pandemic began in 2020, the Hartford’s world was turned upside-down, and the boys were dramatically affected.
“The isolation, change in routine and the halt of much-needed services put a strain on our kids, and I knew I needed to do something,” said Candice. In 2022, Candice transformed her playgroups and events into Raising Harts, a 501c3 nonprofit dedicated to supporting families with neurodivergent children through programs and mentorship.
“In our first year, we served over 160 families and provide resources for parents who are new to the autism diagnosis,” said Candice.
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