The day after Lyra was born, I called my obstetrician, who had willingly provided prenatal care and medical back up for my home birth. And I explained that while otherwise healthy, Lyra appeared to have Down syndrome. Within minutes, I received a call from the pediatric practice she uses for her own children telling us to come in immediately. Lyra was seen before she was even 24 hours old. The doctor who examined our newborn daughter gave us the necessary referral to the Genetics Center at Akron Children’s Hospital where we went the following day to confirm that Lyra has Down syndrome.
True Confession: My children do not go to a pediatrician
Okay, so maybe it’s not such a biggie, as in confessional biggie, that my children go to the same family practice as I do. But let me add that I have never scheduled “well baby visits” for my children. My kids are, for the most part, fabulously healthy. I take them to the doctor, or in our case the nurse practitioner, when they are sick or need a physical for sports. How my children are growing compared to other American children was never something I was interested in enough to spend time in an office and pay good money to find out.
Frankly, the point of these so-called well baby visits is primarily to keep the American Academy of Pediatrics (AAP) vaccination schedule, which I do not follow. Vaccinations have been a controversial issue since before Claude was born nearly 20 years ago. Like many things (such as hospital vs. home birth, educational approaches, how the food we eat is grown or raised), I have questioned the status quo on vaccination, but I also avoid zealotry. Proponents and opponents of vaccination are both ardent in their opinions. I am not opposed to vaccines, yet neither do I follow the recommendations of the AAP. I wait until my children are a year old to begin vaccinating them (except for Hib); I don’t give them all the vaccinations that are recommended (most children are not at risk of contracting hepatitis, for example), and I do not have them administered all at once. I am not advocating my approach for other families, but rather this is the compromise I have come to for my family after much research and many conversations with a wide array of health care providers.
Max and I soon understood, however, that with Lyra we would have to adjust our approach. This included finding a pediatrician with whom we felt we could develop a relationship as we encounter health care concerns with our daughter that we’ve never had with our other children. The pediatric practice my obstetrician sent us to seemed appropriate for a number of reasons. First, since they are affiliated with Akron Children’s Hospital, it presumably would be easier to coordinate Lyra’s care and records with other ACH docs, such as her ophthalmologist. Second, one of the pediatricians in the practice has a nephew with Ds, something I had learned through the Upside of Downs support group. Finally, it seemed appropriate precisely because it is the practice to which my OB takes her own children, as she is the physician whom I have trusted through two “advanced maternal age” home births.
But then, after our first visit, I had to call this pediatric practice without the assistance of my OB. On three separate occasions when I called, the phone rang once and then I was put on hold without any human interaction. For up to 15 minutes, I listened to techno hold-music that was regularly interrupted by the recording of a woman’s voice that went something like this:
Letters to keep heat on in the home are only signed during the months the state accepts the letters and will only be signed if there is a medically compromised child in the home.
After hearing this condescending message up to 30 times per call to the office, I felt like it was my heat that was going to be turned off and that I really ought to argue with someone about it.
The last time I called that pediatric office was to ask for a prescription to have Lyra’s hearing tested. When a live human being finally answered, she told me I would need to leave a message on the nurses’ line and someone would call me back within 24 hours. I left the message but never, ever received a return call. No matter how qualified their physicians might be, a practice with a phone system that bars access is not a workable option.
The Continuum of Jewish Women
One of the beauties of middle age is some narrative arcs reveal themselves. And so it is that at nearly every significant, if not extremely stressful, juncture in my adult life, Jewish women have helped me out. I can’t say why that is, though I no longer believe it to be coincidental because it now seems predictable. Here are three examples from a much longer list:
1) University. When I wrote my undergraduate thesis in religious studies at Ohio State University, my departmental advisor was a committed devotee of the then-rampant theory of Deconstruction. He felt I worked like an old-fashioned historian, one who looks for facts and truths. While I understood irreducible truths are hard, if not impossible, to find in human interactions and events, I was never able to discern how he wanted me to approach my project. I met with him regularly and left every time feeling frustrated and rather dumb. In the end I went with what I knew how to do (hypothesis, research, results), and my advisor was unwilling to approve my thesis. On my thesis committee was a history of art professor with whom I had taken four classes and who later became the dean of the graduate school at OSU. While strongly disagreeing with my advisor, she told him she would work with me to craft my thesis to his satisfaction. And she did, even though her own scholarly research and writing, along with teaching, made her one of the busiest professionals I have ever known. Ten weeks later, my thesis was unanimously approved, even though the substance of the work remained the same.
2) Children. After several frustrating years of trying to understand why my oldest son, Claude, wasn’t learning in school, a triumvirate of Jewish women helped turn things around. An Orthodox psychologist first diagnosed his dyslexia and then she helped me to navigate his remediation. For several months, Claude worked every Sunday morning with an Orthodox occupational therapist at her home in an Orthodox neighborhood in Cleveland (during his appointments I went to the neighborhood bakery and bought seeded corn bread). For several years, I took Claude twice a week to the home of a tutor I found through the American Dyslexic Association, who, yes, is also Jewish. After Claude finished tutoring, Jules too was diagnosed with dyslexia and back we went. With little break in between, I’ve been going to this woman’s house for a decade. Without these three women, I don’t know how I would have facilitated my boys’ mastery of reading (mastery may sound like hyperbole, but Claude scored 34 in reading on his ACT, which is nearly perfect).
3) Divorce. There is an aphorism in the legal profession that clients choose attorneys who have similar personalities to their own. Jerks pick jerks, efficient types pick efficient types, et cetera. I like this adage because my divorce attorney is a class act who worked with me for just shy of four long years (including post-decree enforcement). Highly regarded by her colleagues and the courts, she and her associates are hard negotiators who worked to end things quickly without sacrificing either what my boys and I needed or an ounce of their own professionalism. That the process took so long is due largely to the fact that the defendant went through a series of four attorneys and with each succession, we had to start all over again. Divorce sucks. A protracted divorce with someone driven by animosity is a nightmarish ordeal. I can’t imagine how I would have gotten through it with any other attorney.
Back to finding a pediatrician
Through the Upside of Downs organization I have met a number of families from Medina whose pediatrician has an eight-year-old daughter with Ds. People in Akron don’t often go to Medina, 15 miles west, for things like doctors, even though they commonly drive 40+ miles to physicians in Cleveland. I decided to meet Dr. M and after the first call, I knew we had found our practice. The person who promptly answered the phone also scheduled our appointment, asking me, “Dr. M loves patients with Down syndrome and she schedules longer visits with them, is that okay?” When Lyra and I went to that first appointment, Dr. M spent over an hour and a half with us. At the next appointment, only a couple of weeks later so we could monitor Lyra’s weight, Max came too. Again, Dr. M spent another hour and a half with us and she told Max, as she had previously with me, “I’m a New York Jew and I’m just gonna tell you what I think.” Well, of course she is.
And what does Dr. M think?
She thinks we can have a respectful dialogue about vaccines and she backs up her recommendations with data. Just as importantly, she doesn’t try to make me feel like a bad mother for not following the standard of care on this issue.
She thinks that the more intelligent the parents, the more likely a child with Ds will have a higher IQ, but the kids with Ds who have higher IQs also have greater rates of ADD. “I know what you’re gonna ask,” Dr. M said when I was going to ask what was the highest IQ we could expect, “but first you tell me the highest level of education you and her father have.” It was only after I answered that she told me the correlation between parental intelligence and that of children with Ds.
She believes in pushing early reading because it comes easily to many kids with Ds and not only does it give them another way to communicate, it makes them feel good about themselves. Note: Many kids with Ds read by age three. They are visual learners with strong short-term memories.
She believes in physical and speech therapies and wrote prescriptions for me on our second visit. Crawling strengthens the brains of all kids, making it particularly important for kids with Ds to learn. But kids with Ds often don’t crawl without intervention (they scoot or roll to get where they want to go). Speech therapy involves anything related to the mouth and we have not had much success in getting Lyra to take a bottle.
Basically, Dr. M believes in getting in there with all available resources and pushing these kids to be the best they can be. In so many ways, it is little different than what I learned to do with Claude and Jules to overcome their dyslexia. It doesn’t mean abandoning all else and focusing our entire lives on Lyra, but rather incorporating into our daily lives what will help her develop and succeed to her highest potential. For years, driving to school with Claude and Jules has been the time to practice sight words. Whenever I sit with Lyra in my lap, I move her around in ways that help strengthen her back and core muscles. Not the entire time, but a little here and a little there.
At our last visit, Dr. M went over the results of the echocardiogram Lyra had in late November. “So they think there’s a shadow here,” said Dr. M as she drew on the exam table paper a box divided into four sections and then told me to imagine it was a heart. Pointing to where the shadow was on Lyra’s echocardiogram, she said, “This is the patent foramen ovale and it is found in all fetuses because they are not using their lungs and, therefore, the heart circumvents the lungs in utero. After the baby is born, this hole closes up in the first weeks of life. Typically. But in 20% of adult autopsies on the general population, this hole is still there. So, we’ll check again in a few months. Other than finding nothing, this is the best result you could get on her echo.”
Yes, that’s how she talks and it comes out rapid-fire fast. I love it. Hit me with more than I already know and if I don’t understand, I’ll ask. If Lyra really does have a patent foramen ovale hole, it will likely close on its own. If it doesn’t, that doesn’t necessarily mean she’ll need it surgically closed. But if she should, it is not open-heart surgery, which is hard on a patient. Instead, foramen ovale holes are surgically closed by going through a vein in the artery.
“So let me get this straight,” said Dr. M at the end of our last visit, “her heart is good, her hearing is perfect, her growth is average. Other than the cataracts in her eyes, it looks like this kiddo has no other major health concerns, right?”
“Yep, none that I am aware of,” I said.
“You are really, really lucky, you know that?”
Yes, yes I do. We are very grateful that our daughter does not have any of the many serious medical conditions that often accompany those diagnosed with Down syndrome. Max and I frequently say so to each other. But we still have a child with a genetic disorder and we are lucky because of the enormous support we have in our community as we meet the needs of our youngest child. Not only the professionals, like Dr. M., not only the other families we’ve met through the Upside of Downs, but people who are part of our wider community and have been since before Lyra’s birth. Friends from the Waldorf school, friends from our professional lives, friends who are just friends—so many of whom have step forward with a kind word, a meal, prayers, offers to transport other children, teach us all sign language. Our day care provider, who performs reiki and went to speech therapy with us, so loves Lyra that I don’t ever worry about leaving her.
I have at various times in my life felt isolated, even when among others. This is not one of those times. If, as I wrote in my last post, Lyra galvanizes us as a family, she also resonates outside our family, revealing to us just how we are connected to and held by our larger community. For this, we are indeed really, really lucky.