Metabolic

The other side of the doctor’s table

With her daughter not thriving, a pediatrician finds herself immersed in a world of insecurity, support groups, and advocacy.

I’ve wanted to be a doctor since I was a ridiculously young three years old, and I’d narrowed it down to pediatrician by the time I was seven. I followed my dream pretty much according to plan and only took some extra time off after the birth of my first son. I really thought I could “have it all”… until the birth of my third child, Rivka.

Rivka was a challenge even before she was born. I didn’t feel like my first two, a sonogram showed she had a single fused pelvic kidney, and I was in preterm labor that required bed rest. Almost from the start, Rivka has not eaten, slept, gained weight or developed as well as my two older children. At the age of eight months she qualified for early support in all areas.

Around the same time, a comprehensive medical examination revealed a metabolic abnormality that, as a pediatrician, I had never read or seen about. We took Rivka to a prominent specialist who basically said we would never be diagnosed, this metabolic abnormality was non-specific.

I couldn’t accept that! As a pediatrician, I’ve worked hard to get accurate diagnoses for my patients – how could I not have one for my own daughter? How are we supposed to know what to expect or how to help her?

We have dealt with many issues over the years from failure to thrive, global delays, sensory issues, behavioral issues and seizure disorders.

I can’t tell you how hard I worked to get this elusive diagnosis or how much effort I put into finding the best treatments and therapies. This included sending her urine on ice for metabolic studies (the technology now used for the enhanced newborn screen was still in its infancy at the time; I had to send her samples to Baylor University in Texas); private lawyers and barristers to fight for adequate services; many, many specialists and reviews; countless hours of research; and many different self-help groups.

Yes, I became the “queen of the support group”; Whatever their most pressing concern at the time, I had a support group for it, including FOD support, for families with children with fatty acid oxidation disorders. (At one point we thought she had this disorder, based on genetic testing that later turned out not to be the cause of her problems — I remember sobbing in the corner of my laundry room as the geneticist explained it to me.)

Rivka has ‘autism plus’ – we still haven’t identified the underlying cause.

We have dealt with many issues over the years from failure to thrive, global delays, sensory issues, behavioral issues and seizure disorders. As Rivka got older, her social deficits became more obvious and disabling. At the same time, the concept of autism as a spectrum became more accepted. While Rivka’s autism diagnosis at the late age of eleven didn’t explain everything, it was so helpful to give me a community of “autism moms” who faced so much of what I was going through. Rivka has ‘autism plus’ – we still haven’t identified the underlying cause. But I’ve learned the hard way to accept that, as your first metabolism specialist so many years ago accurately predicted, we may never know what it is.

I’ve learned so much from the other “autism moms” who keep up with me and sometimes beat me when it comes to helping their complex and challenging children. I already knew I had to be my child’s best advocate — that’s Special-Needs Parenting 101. But I saw an amazing and incredible resilience and passionate determination that continues to inspire and drive me to pass it on to others.

Did I forget to tell you that I had to “quit” medicine to fight for my daughter? For many years? So much for having it all, which is a bunch of crap anyway. It was very painful for me to give up a lifelong dream, but reading stories of other people – especially parents of special needs children – who have been through tremendous hardship and kept their faith, along with tons of prayer, has kept me going.

Years later (and a walk-in closet full of files with evaluations, IEPs, doctor’s reports, etc.) I managed to return to medicine (I’d kept my credentials and knowledge up to date the whole time; plus, I’m having trouble with Rivkas alone learned so much in pediatrics).

At one point I had a list of silly, sometimes painful things doctors said to me when I was a “housewife.” I was finally on the “other side of the desk” again, the doctor and no longer the mother, and I was determined not to be that kind of doctor. I really feel like my life has two parts – before and after Rivka. I used to have the illusion of being in control. After that I was much more humble and understood that only God is in control. I was also aware of the tremendous challenges many parents face and what it feels like to have those struggles.

While I still have no underlying diagnosis for Rivka and have not been able to “cure” her despite gargantuan efforts, she has given me incredible gifts.

A little over a year ago we were offered a valuable place to live for Rivka, which I didn’t feel ready for yet. But to my great surprise, when Rivka found out about the opportunity, she turned to her sister and said, “I’m moving out!” Around the same time, I joined an amazing organization called JOWMA (Jewish Women’s Medical Association). This organization was started by Eliana Fine Feld, who used to be my daughter’s job coach and is now a third-year medical student. A focus of this group is healthcare advocacy, which I am very committed to and passionate about.

While I still have no underlying diagnosis for Rivka and have not been able to “cure” her despite gargantuan efforts, she has given me incredible gifts. I still wish I had a wand to wave over her and erase her problems – her challenges remain great and they are painful for her and for me. But I’m no longer waiting for the “miracle cure” or a diagnosis that will clarify everything. I continue to stand up for Rivka and encourage her to stand up for herself. I try my best to use everything I’ve learned to help others. I firmly believe that everyone has a purpose and being able to give back everything I’ve learned from Rivka makes me feel like the pieces of the puzzle fit together.

Excerpt from the recently published book More Than Special. Ahava Speedwell explores the world of children with special needs and their families. This book is for anyone inspired by the compelling and heroic first-person stories of families and individuals facing challenges. Included are articles by eminent rabbinic figures and leading experts in the field, as well as the evolving world of people with special needs and the valuable role they play in today’s society. Click here to order.

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