| Theme 1 – Professional Pathway to Providing Care to Women with Disabilities during
Pregnancy |
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| Subtheme 1: Unplanned career pathway |
Well, many years ago there’s someone that was just a business acquaintance, a medical director of a
school or home for adults with severe mental and physical handicaps…he asked if I would be the
gynecologist and I was for 10 years. I went out there and actually did exams and the Pap smears at the
facility. And then they switched over to having the exams not done at the facility, but that had given me some
experience so when the past gynecologist of our clinic was promoted, he asked me to take over…and have
been doing it ever since. About 24 years ago when I moved to current city, the neighbor next door to me was a doctor and assistant
director for a free-standing rehab hospital….he couldn’t get any gynecologists to see the
patients. But since I lived next door to him, I said, “I’ll see them.” So for the past
over two decades I’ve been going every month…to see patients in their clinic….so that
was my connection with patients with disabilities and injuries like cord injuries.
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| Subtheme 2: Lack of formal training |
I can’t say that during my [MFM] fellowship I had any specific training in it.
It’s mostly on-the-job training. I did not have formal training beforehand, but I had an active interest in the topic, so I was seeking
literature and reading whatever I could… So I was teaching myself. I don’t think people are really particularly given any background…just wasn’t a
specific focus…It just was one of those things, as you got someone who had the needs we just sort of
figured it out.
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| Subtheme 3: Educating Other Clinicians. |
In fact about three or four months ago I was thinking…“Why don’t we have this in our
area?” I’m thinking well, maybe I can do something about that…I’m going to
dedicate myself to reaching out to hospitals and medical centers throughout the country and see if I can help
them and convince them to open a clinic just like ours….I’m really looking forward to it. The main message I give [when teaching other clinicians] is actually taking care of disabled
patients even though sometimes it’s awkward and difficult and labor intensive, it’s very
rewarding and when physicians do take care of these patients – I’d say a physician who has no
experience with it, that should not discourage them. They should be fine. They’ll figure out how to
examine the patient.
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| Theme 2 – Clinicians’ Experiences Caring for Women with Disabilities
During Pregnancy |
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| Subtheme 1: Clinicians’ Positive Experiences |
It was just really nice taking care of her (a patient with a SCI). She had a really good outcome. I sort of get
emotional, because…some providers didn’t want to take care of her. But we did a good
job… it was very complex, because we didn’t really know, like is the fetal blood sampling
going to trigger autonomic dysreflexia or not? What kind of anesthesia should we provide for this, because
usually we don’t really give anything? It was clinically challenging. It’s very, very rewarding to care for people with disabilities because they just…they are able
to navigate what’s a difficult situation for anyone to try to get health care…and so we found
it incredibly rewarding… It developed into a real mission for us, especially at the birth center. If
other providers knew that and had any kind of sense of that they might go out of their way to incorporate
these women into their practice because it’s so, it’s such a good thing to do. It’s
the right thing to do, you know, and it’s rewarding and the people are so grateful. I think…when people with disabilities want to have children, they’re so excited when it
actually happens. It really is very rewarding for everybody. So the time is worth it, in that sense, you know?
Though sometimes you say, oh my gosh, how is this going to work? This one patient who lived [nearby]… insisted that she wasn’t going home by
car. Because she goes everywhere…in her motorized wheelchair, and she insisted on taking her son home
in her lap. Now, I watched her…she put her baby in a harness around her neck, and she motored out of
the hospital, went down the sidewalk, and I walked to the corner and waved her goodbye. I’ll never
forget that… everything worked out just fine. That was a career highlight. It’s just so rewarding. Patients all seem to be very pleasant and in good spirits and they’re
happy that someone is treating them with dignity and more than that, just taking care of them. And so, gosh,
it’s just, the whole thing is extremely rewarding… Our practice is one of the few that has a
dedicated clinic…when they find us they’re very happy.
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| Subtheme 2: Clinicians’ Negative Experiences |
System-related issues…those were the frustrations that we had. It was never a negative experience with
the patients themselves. So I think that…the only negatives, like I said, are the systems things.
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