“I don’t care if it’s a boy or a girl, I just want the baby to be healthy.”
That familiar refrain for parents-to-be and experienced parents works out to be true most of the time, but occasionally children do develop illnesses, or receive a short- or long-term diagnosis that changes the typical path of parenthood. Autism, diabetes, cancer, ADHD and more—such diagnoses can throw the usual “parenting how-to” guidelines out the window.
Dr. Rebecca LePage, a Wilton mom and pediatrician, has created a new kind of pediatrics practice to help parents navigate these kinds of uncharted paths, be they major medical crises or even just the uncertainties of parenthood. Rather than being a primary care pediatrician who performs typical well-child check-ups and sick child treatment, LePage said she’s a different kind of pediatrician.
“I’m a medical consultant and family advocate: I support, educate and advocate for patients and their families with concerns about their needs.”
She explained what that means:
“I can help with diagnoses, researching who should be treating you, researching how often you should be followed, helping guide you through how this will impact your life. Pediatricians know a lot about a lot of things and specialists know a lot about particular things. But they might not have a lot of time. There’s also the emotional impact of illness: most people who end up seeking medical care have a lot of emotional, psychological and social ramifications associated with the diagnosis, which often get pushed aside. There’s a reason why families with special needs kids or kids with a major illness that often end up in divorce, because it’s hard, and who is supporting those families? Pediatricians try, but those families need a lot more TLC than a doctor who has to see so many patients can give them during the day. I want to figure out what the family’s priorities are, what’s important to them, how are the other kids being incorporated into the new normal, if there’s a stay-at-home-parent who is the primary care-giver, how is that parent getting support? If there’s a parent who’s working long hours, how is that parent not being marginalized with decisions about care? It’s figuring out how we can help the family work.”
She didn’t create this kind of medical practice just because it was an existing career path. Instead, she realized there was a need for doctor-advocates when her own daughter, Gracie (now three-and-a-half years old) was diagnosed at age one with a complicated condition that scared LePage, despite her own extensive medical training and background as a children’s doctor.
“The minute she got the diagnosis I was like, ‘I need second opinions, I need the best second opinions, and I need it tomorrow!’ I wasn’t comfortable waiting for a couple weeks. At the time I thought it was potentially life-threatening—thankfully it wasn’t. But I realized that I had a leg up doing the research on where to take her, because I knew which hospitals to look at and where to start. And then calling them, you get gatekeepers—I was able to break through the gatekeepers because I had the ‘Doctor’ before my name. It was no easy feat. Then we needed to submit a medical history before they’d consider whether to take her. I can do that, but what about the parent who can’t?”
After the initial situation for her daughter calmed down, LePage knew that other families facing similar situations wouldn’t have the same advantages she had as a physician.
“In the back of my mind, I wondered what other parents, who didn’t have my training, what were they doing? How would most people deal with that? With our case, we got a sixth opinion and a seventh opinion, and some of them were conflicting. Even I couldn’t sort through that, and my pediatrician was having trouble sorting through that. I have the education; I have the jargon; I have the doctor with my name, and I’m having trouble with this. What is someone who doesn’t have all that doing? What is someone who is working full-time and who needs to work full-time, and then they have this, which is kind of a full-time job, doing?”
Bringing both experiences—as doctor and as mom—to the table, LePage said, gives her a unique sympathetic perspective for the patients she works with. “I’ve been on both sides, even though I am a pediatrician by training, it’s very different when it’s your child.”
That initial moment of diagnosis—getting a ‘label’ can often be scary and paralyzing for a family. Having an advocate who can demystify things might empower families to face the steps ahead of them. Given some challenges of modern medicine, with limits and structure often restricting the amount of time a general doctor or even a specialist can spend with a patient, it may not leave a great amount of time for those primary care doctors to give that kind of extra attention a critical situation may require.
“My own children’s pediatrician made a good point: when you’re seeing 20 patients a day, everyone’s emergency can’t be your emergency, you have to prioritize, and it became abundantly clear that the way the current system is doesn’t always work for everybody. Hopefully you have healthy kids and you never have an issue, or you have healthy kids that you don’t have concerns about,” LePage said, adding that often when doctors do go above and beyond to provide more intense care, “it’s often on their own time.”
As for the specific services LePage will provide, she said it will vary based on patient need.
“It started off with kids who have a complicated diagnosis—helping families get the diagnosis, to helping them get second opinions; helping them figure out what kind of follow-up they need—a lot of diseases aren’t related to just one type of doctor, you have to have specialists. Children with genetic diseases, metabolic syndromes, even kids on the spectrum have a lot of different needs and they see a lot of different specialists. Coordination of care can be exhausting,” LePage said.
“I want to help those families—I can write their medical histories, I’ll help them find specialists, I’ll call the specialists and make the introductions; I’ll help them figure out the calendar—this is who you’re going to see and when, this is how often that doctor needs to be seen. I can help parents organize all the medical documentation they get—your child gets a diagnosis and you get radiology reports, and specialist reports. I’m good at getting it organized, and the sheer volume that comes in, and figuring out what to do with it, what’s important and even what’s duplicate. If you don’t know how to read it, you may not know that.”
The thing LePage won’t be is a traditional pediatrician. “I think one of the biggest misconceptions is that I’m a concierge doctor. I’m not going to be anyone’s primary care physician.”
But she will be a primary educator for her patients and their families, helping them learn and figure out the healthcare world they have to navigate. “So much of medicine is about education—educating them how to best take care of themselves, of their kids, how to best advocate for themselves and their children. Some of that has been lost over the years, and I really want to bring that back.”
The age of patients LePage will range from birth through college age. “A lot of it will be working with the parents, but sometimes, depending on the age of the child, I can meet with the child too. At first I was focused on big diagnoses—cancer, autism, diabetes. But to some parents enlarged adenoids, and whether to put in tubes or take the adenoids out, if it’s your child that’s big. Sometimes doctors can lose sight of the fact that a straightforward ‘minor’ diagnosis isn’t necessarily minor or straightforward when it’s your child.”
For those parents who get a scary diagnosis or even just need a little bit of extra help figuring out the nuances of parenting, she ultimately hopes to be the one to reassure them that they’re in good hands and that they can find the best care possible for their little ones—and that together they’ll try to do their best to make it all okay in the end.
“As human beings, it’s amazing what we can deal with. We’re so resilient, even when you don’t think you are. What we bend and adjust to is amazing. But from experiences I had with my daughter as the patient, and with me as the patient, I understand how in crisis situations, you don’t know how you’re going to move forward and how life is ever going to be okay again. When you’re in the thick of it, you can’t imagine you’re going to get there. Having someone who is not a family member or a close friend saying, ‘You will get to a point where you will be okay, and here’s how we’re going to make sure it’s okay,’ is necessary.”
LePage is also I know how stressful raising children can sometimes be in the best of circumstances. If I can help alleviate some of that stress, I’ll do it in a heartbeat, because there were people who really did if for me. I’m lucky that I was well-connected as a physician; I just want to return the favor—I think there’s something to be said for paying it forward.”
Dr. Rebecca LePage is on the Parent Advisory Board for Wilton Preschool Services, and previously was a clinical assistant professor of pediatrics at New York Medical College. She has been published in the Journal of Pediatrics and the International Journal of Eating Disorders, and has had her research presented at the annual meeting of the American Psychiatry Association. Her practice is located at The Life Solution Center of Darien, 36 Old Kings Highway S., Suite 210 in Darien. For more information call 917.428.7952 or visit her website.