The Other Side of the Physician’s Desk.
With her daughter failing to thrive, a pediatrician is submerged in a world of uncertainty, support groups and advocacy.
I wanted to be a doctor from the ridiculously early age of three, and I had it narrowed down to pediatrician by the age of seven. I followed my dream pretty much on schedule, only taking some extra time off after my first son was born. 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 did not feel the same as with my first two, a sonogram showed she had a single fused pelvic kidney, and I had preterm contractions requiring bedrest. Almost from the beginning, Rivka did not feed, sleep, gain weight, or develop as well as my two older children did. By the age of eight months, she qualified for early intervention in all areas.
Around the same time, an extensive medical workup showed a metabolic abnormality, one I had never read about or seen as a pediatrician. We took Rivka to a prominent specialist who said, basically, that we would never get a diagnosis, this metabolic abnormality was nonspecific.
This was not something I could accept! As a pediatrician, I worked hard to get accurate diagnoses for my patients – how could I not have one for my own daughter? How would we know what to expect or how to help her?
We dealt with many issues over the years, from failure to thrive, global delays, sensory issues, behavioral issues, and seizures.
I can’t begin to tell you how hard I worked to get this elusive diagnosis, or how much effort I expended on finding the best treatments and therapies. This included sending her urine on ice for metabolic studies (the technology used for the expanded newborn screen now was in its infancy then; I had to send her samples to Baylor University in Texas); private advocates and lawyers to fight for appropriate services; many, many specialists and evaluations; countless hours of research; and lots of different support groups.
Yes, I became the “support group queen”; whatever was her most pressing issue at the time, I had a support group for it, including FOD support, for families of children with fatty acid oxidation disorders. (At one point, we thought she had this disorder, based on genetic testing that was later found not to be the source of her problems – I remember sobbing in the corner of my laundry room as the geneticist explained this to me.)
Rivka has “autism plus” – we still have not identified the underlying cause.
We dealt with many issues over the years, from failure to thrive, global delays, sensory issues, behavioral issues, and seizures. As Rivka grew 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 did not explain everything, it was so helpful in giving me a community of “autism moms” who were facing so much of what I was going through. Rivka has “autism plus” – we still have not identified the underlying cause. But I have learned, the hard way, to accept that we may never know what it is, as her first metabolic specialist accurately predicted so many years ago.
I learned so much from the other “autism moms,” who matched and sometimes beat me at efforts expended for helping their complex and challenging children. I already knew that I had to be my child’s best advocate – that is Special-Needs Parenting 101. But I saw amazing and unbelievable resilience and fierce determination that continues to inspire and drive me to pass them on to others.
Did I forget to tell you that I needed to “drop out” of medicine to fight for my daughter? For many years? So much for “having it all,” which is a bunch of hooey, anyway. It was very painful for me to let go of a lifelong dream, but reading stories of other people – especially parents of children with special needs – who went through tremendous difficulties and maintained their faith, along with tons of praying, kept me going.
Years later (and a walk-in closet full of files of evaluations, IEPs, doctor reports, etc.), I managed to return to medicine (I had kept my credentials and knowledge current throughout; additionally, Rivka’s issues alone taught me so much in pediatrics).
At one point, I had a running list of stupid, sometimes painful, things physicians said to me while I was a “stay-at-home mom.” I was finally back on “the other side of the desk,” the physician and not the mom now, and was determined to not be that kind of doctor. I really feel that my life has two parts – before and after Rivka. Before, I had the illusion that I was in control. After, I was much more humble and understood that only God is in control. I was also much more aware of the tremendous challenges many parents face, and what it feels like to have these struggles.
While I still do not have an underlying diagnosis for Rivka and was not able to “cure” her despite gargantuan efforts, she has given me unbelievable gifts.
A little over a year ago, we were offered a precious residential placement for Rivka, which I did not feel ready for. But, to my great surprise, Rivka, when told about the possibility, turned to her sister and said, “I am moving out!” At about 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. One focus of this group is health advocacy, which I have become very involved with and passionate about.
While I still do not have an underlying diagnosis for Rivka and was not able to “cure” her despite gargantuan efforts, she has given me unbelievable gifts. I still wish I had a magic wand to wave over her and erase her problems – her challenges remain great, and they are painful for her and for me. But I am no longer waiting for the “magic cure” or a diagnosis that will clarify everything. I continue to advocate for Rivka while empowering her to stand up for herself. I am trying my best to use everything I learned to help others. I do believe that everyone has a purpose, and being able to give back from all that I learned from Rivka makes me feel that the puzzle pieces are falling into place.
Excerpted from the recently published book, More Than Special. Ahava Ehrenpreis explores the world of special needs children and their loved ones. This book is for everyone to be inspired by the fascinating and heroic first-person narratives of families and individuals with challenges. Included are articles by major rabbinical figures and leading professionals in the field, as well as the development of the world of individuals with special needs and the valuable role they fill in today's society. Click here to order.