Getting a Child’s Diagnosis as a Working Mom Was Overwhelming…and I’m a Doctor

When my twins were a little over 2-years-old and in a nursery school program, a special education teacher observed my son and daughter for 10 minutes and told the school director to call me into the office the next day. The two of them sat me down and said, “Your children are going to fail kindergarten if you don’t get them help.” And I said, “What are you talking about? They’re 2-years-old.”

They pointed out that both had issues—they weren’t speaking clearly, they didn’t hold things correctly, they didn’t have muscle strength. I kept thinking, “I don’t believe it, I don’t believe it,” and told them I wanted to come in for a week to watch my kids. So I did.

Up until that moment I’d thought my twins were OK. I’d been on my happy mommy autopilot, in a demanding job at a pharmaceutical company, monitoring the safety of medical devices and prescription drugs. In fact, I’d just gotten a huge job offer as a chief scientific officer. Meanwhile, it seemed to me that my son and daughter were hitting their milestones—they were social, they were moving, they were saying words, they were eating, pooping and peeing.

But I saw something different when I watched my kids at school. My son was not eating or doing physical activities as well as the other toddlers. My daughter’s tantrums seemed more intense and overwhelming than the other kids’ meltdowns. I saw the physical, verbal and motor delays that affected both of their development overall.

There were so many things that were pointed out to me that I felt like I’d failed my kids. And I felt that way as a physician, somebody who’s in healthcare, someone who’s empowered. I felt disbelief, guilt, fear—whom could I talk to, where could I go?

The Search for Answers

I called my pediatrician’s office in tears to explain what I’d been told—that the teachers at the school thought my kids had hypotonia, or low muscle tone. They told me to wait until my next appointment, which was in a few weeks. Of course, I didn’t want to wait. Instead I got to work. I turned down the job offer, took a step back in my professional career and prioritized my family.

Over the next few months, I called the physical, occupational and speech therapists and special ed teachers that had been recommended to me. But then I’d find out that they had a two-month waiting period or they weren’t accepting new patients or they didn’t accept my insurance. So I’d have to tap into my network and the healthcare system to find my own resources.

At the same time, I was trying to educate myself online. It was overwhelming. I had to go to 30 to 40 websites to get the whole picture for low muscle tone. And spend 100 hours for weeks putting together a list of tools. There was so much I didn’t know—there were all these organizations, I could do this specific activity or exercise, alter my kids’ nutrition or be proactive on how I send them to school or what words to use.

I, like every other parent who has a child with any type of challenge, whether it’s food allergies or anxiety, am the CEO of this journey. And it’s fragmented. It’s self-driven. It takes up your whole life. The info you find is conflicting. It’s frustrating. You can’t find the right providers. You can’t see the right providers. And the whole time you’re just trying to figure out what’s wrong with your kid.

On top of it, you’re not making rational decisions because you’re so worried. So your productivity at home and at work goes down. You start being absent in your life. And that has costs to corporations, to your mental wellbeing.

I must have talked to 50 or 60 different specialists before I had a plan in place. But my journey wasn’t over then, either. I had to get an evaluation with the New York City Board of Education, which is a whole other different process that parents don’t understand. What is an individual education plan? What do categories like special needs and delays mean?

Even after the evaluation I had to return to the Board of Ed multiple times just to say that I need a variety of services for my kids. Luckily, early intervention with the right specialists and resources made a difference, and my children are now fine.

But the experience had such a profound impact on my life—personally and professionally—that I decided I had to do something with this journey

A Roadmap for Parents

Over the next seven years I talked to over 1,200 parents and caregivers and over 500 different providers. I discovered there were three different pain points that all of them experienced in providing or receiving care. One was access to people in one place who could answer your questions or offer guidance, instead of going to 15 websites to get care for the same child in 15 different areas. I mean, how many logins can a parent have?

The second pain point was information. As a doctor, I’m pretty good at looking at information and figuring out if it’s credible and based on evidence. I found a lot of information online is inaccurate, outdated or not peer reviewed. And I thought, “Oh my gosh, not only is access to care siloed, but access to information that you can understand, digest and count on is too.”

The third component that was so important was community. Being able to go to one place and find another parent that I can identify with and get support from because it was so lonely. And I dealt with a lot of guilt: I’m a doctor. How could this happen to me? How could I miss this?

So I thought, what if I build a platform that has all these things—where you can learn, share and find care. Where parents can contact people from various specialties—from doctors to educators to acupuncturists—to get virtual care and advice for their child. Where they can find information that’s evidence-based, accurate, up-to-date and simple, as well as connect with other parents facing the same challenges.

So I put together a team of people and we built Face2Face Health. Our site is an aggregate of the broken-down, disconnected system that exists for education, care and support communities. It’s like a GPS for parents on the top 125 conditions that children from birth to 18 face—80 medical topics and 45 education and parenting-related topics, ranging from bullying, sleep disorders and anxiety to biting, self esteem and internet safety. This puts a stop to the fruitless searching online that eats up so many hours of your “free” time.

Let’s say you suspect your child has dyslexia, or has already been diagnosed with it. When you go to Face2FaceHealth, you can buy a course that takes about 30 to 40 minutes to go through. Yes, that sounds like a lot, but you’re getting all the apps, toys, books, games and resources that have been vetted by experts; a list of all the supplements that are backed by science-based testing; a list of all the alternative therapies that have evidence showing their success; and all the screening tools. You’ll find out what you can do at home and at school.

Everything’s built into the system. For example, when you go into the platform and you see an app listed, clicking on it takes you right to downloading it. You don’t have to go and find it on your own.

And if you find something better—an app, a book or a website—post it in your community. We can look at that information, check it and make our interactive courses even better. We can add new topics and webinars.

In early 2020, we’ll be adding providers that you can speak to via video, phone or at your home who can partner with you to help solve your child’s problems. But you don’t have to wait until then. You can help your child starting now. Face2Face Health is ready for you here:

Use organization code WM001.

Dr. Shah is a Board Certified internal medicine physician, a fellow of the American College of Physicians, Board Certified in integrative medicine, and is also fellowship trained in anti-aging, regenerative and functional medicine and aesthetics. She currently practices part-time integrative, personalized medicine, which has focused on integrative evidence-based, peer-reviewed holistic health, e-consulting, physician health coaching and telemedicine services for over 15 years.