While navigating the medical system for 16 years on behalf of her daughter Rachel, Catherine Allen learned a thing or two along the way.
Rachel was born with CHARGE syndrome, a complex genetic condition that manifests itself in extensive medical and physical difficulties ranging from heart defects; swallowing, breathing and balance problems; hearing and vision loss; and multiple sensory impairment, all of which can delay a child’s development and communication skills.
“Every one of those letters stands for an entire conglomeration of possible abnormalities – we’re like the all-in-one syndrome,” says Allen, a single mom of three.
Rachel sees nine specialists at least twice a year, but Allen says her daughter’s developmental pediatrician is the glue that holds everything – and everybody – together.
“One of the hardest things for parents of children with special needs is having to learn everything the hard way,” Allen says. “These children are so different, even among the special needs groups. I don’t know anyone else that has exactly the same conditions that Rachel does. That’s what a developmental pediatrician does for parents: They are the only doctor that asks about every area of my daughter’s life, the only one that knows the whole big picture and understands Rachel as I understand her.”
Like Allen, many parents of children with special needs quickly become familiar with the drill: After noticing that something isn’t quite right with their baby, a trip to the pediatrician ends not with answers but with more questions. Often, even experienced pediatricians are not equipped to diagnose and treat complex problems, including global developmental delays. That’s where developmental pediatricians (DPs) come in.
How Are Developmental Pediatricians Different?
DPs evaluate, counsel and provide treatment for children and adolescents who have a wide range of developmental and behavioral difficulties, including learning disorders, attention and behavioral problems, sleep disorders or feeding problems, and developmental disabilities such as cerebral palsy, spina bifida, autism spectrum disorders and visual and hearing impairments.
“Developmental pediatricians have received extra training in caring for these children,” says Dr. Cathleen Roberts, medical director of developmental pediatric services for the Pediatrix Medical Group in Dallas. Rachel, 16, has been seeing Roberts since 2004.
Most often, a DP’s job is to diagnose a problem and then develop a treatment plan.
“The biggest difference is we are really considering the whole child, not just the medical aspects,” Roberts says. “We’re looking at psycho-social factors, environmental factors, behavioral factors, the child himself and the interactions going on in the family.”
DPs also treat children who are at high risk of having developmental issues. Rachel was referred to developmental pediatrics while she was still in the neonatal intensive care unit, where she spent the first nine weeks of her life and underwent several surgeries.
“A large portion of our population is neonatal follow-up, because being born early comes with a higher risk of having developmental issues,” Roberts explains. “We follow those children closely so that we can identify issues early and hopefully intervene early, which usually makes a large difference in how the child will respond.”
Finding a DP
DPs work in hospitals, major medical centers, clinics, private practice, rehabilitation centers, schools and community centers. They often work in collaboration with a team of specialists, including psychologists, speech-language pathologists and occupational therapists.
Typically, referrals to DPs come through a child’s pediatrician, although Roberts occasionally sees patients who approach the clinic directly. Also typical is a very long wait – about six months – before your first appointment. To help keep waiting lists shorter, Roberts’ clinic will only see new patients under 6 years of age.
But parents needn’t sit back and wait for their appointment, worrying that their child is falling behind more with each passing week, Roberts says.
“When we get the intake package back that we ask parents to fill out, we review it, and if a child isn’t receiving any services and it’s clear there are issues there, we will call that family and say, ‘While you’re waiting for our appointment, you can start intervention, and here are some therapies that we would suggest,’” she says.
Roberts’ team encourages families to contact Early Childhood Intervention services in their area so their child can be evaluated.
“They can get them started even before a diagnosis, and in most developmental situations, that’s an OK thing to do,” she says. “The other thing we do is look at what the situation is: If a child is losing skills or having more of an acute issue, we prioritize those patients to make sure that they get seen as quickly as we can possibly see them.”
A Marathon, Not a Sprint
Allen learned that this waiting time can be very productive for parents and suggests that if you’re on the cusp of this uphill journey, there are ways to be proactive.
“For these parents – and I used to be this way when I started out – everything is so vitally important that it needs to be dealt with right now,” Allen says. “But that’s not really the truth, because sometimes what happens during the waiting period, especially if you have to fill out a very intense application, is you’re forced to put everything down on paper, think about it and observe more of what’s happening.”
Allen thought doctors would be telling her what was wrong and what to do, but she quickly realized that as a parent, she was the expert.
“Parents have to be prepared for their appointments,” she says. “Doctors don’t know what’s happening at home, and they cannot observe everything that is vital to them being able to make a really great strategic plan in a 30-minute appointment. They rely on parents’ information.”
First Visit
Roberts notes that a first appointment generally lasts between 90 minutes to two hours, during which she will take a thorough medical history and conduct a comprehensive physical examination.
“We focus on the child’s features, looking at the neurological exam in particular, and also at skin, because those are the three basic areas that help us point to some developmental issues,” she says. “We then look at how the child is interacting in his/her environment: We watch them play, we do some standardized developmental testing to assess where they’re functioning. We then sit down with the family and come up with a comprehensive plan of action. Do we need to get more physical therapy?”
DPs also check what a patient’s school is doing, as well as discuss follow-up plans for the future. Once a child is evaluated, he or she can stay in Roberts’ practice until age 21.
Great Expectations
Parents should understand that while DPs help children make the most of whatever potential they have, adds Roberts, “We can’t guarantee what that potential is. We have a saying: ‘to cure sometimes, to relieve often and to comfort always.’ A lot of what we do is help parents navigate the system and try to give them ideas and other things they can do so that the road is a little bit smoother. It is a long road.”
Allen admits that being Rachel’s advocate is “more than a full-time job. Along the way, it’s a learning process for parents to try to trust in the process, do everything they can and know that what they have to say to their specialists is vitally important.”
Today, after multiple surgeries, Rachel is functionally deaf and blind, although she has a little bit of hearing and vision. She has a tracheotomy and is fed five times a day through a g-tube. Although Rachel has both developmental and cognitive delays, Allen says her daughter is “in a great place.” She completed 10th grade at the Regional Day School for the Deaf at Vines High School in Plano and is excited about being manager of the school’s drill team this fall.
“Rachel lives a lot in her own world of pretend, and I teach all of her caregivers to go into her world, hang out there and use play to bring her into the ‘real’ world,” Allen says. “As long as she's playing in her world all is well, mainly because the pace is much slower and is one that she understands and can keep up with.”
Allen emphasizes that the DPs who have treated Rachel over the years have been invaluable to her.
“DPs helped me understand the big picture and referred me out to specialists so I could get my daughter the help that she needed,” Allen says. “But they don’t only provide referrals; they support me. Because the only way that my daughter can make any progress and thrive is if I can understand what she needs so I can make that happen for her. Their support of me as a parent is vital.”
Roberts concludes that seeing her patients improve year after year – and seeing their parents learn how to manage their care – is incredibly rewarding. “It is a phenomenal experience and I am very humbled. I consider these parents my heroes. They teach me more than I probably give them.”
