It was a dark and stormy night. (Really, it was!) My daughter was born at 2:17AM on January 9, 2008. Our midwife, Ruth, placed her on my chest, and I could feel her heart beating on mine. Her little broken heart, as it turns out.
Ruth was the one who caught it. “Hmm,” she said, her stethoscope pressed to my daughter’s chest. “Sounds like she has a heart murmur. There’s some sort of a whooshing sound.” She paused and lifted her head. “You should go get that checked out.” The very next day, we did exactly that. Two weeks later, we found ourselves in the office of a pediatric cardiologist, who diagnosed her with a rare condition called pulmonary valve stenosis. Specifically, she had a blocked pulmonary valve, a leak in that same valve, and a hole in her heart. (The hole was what caused the whooshing sound.) “We’ll keep an eye on it,” the cardiologist said to us reassuringly. “We’ll need to fix it at some point, but probably not right away.” Two weeks later, at our follow-up appointment, not right away turned into as soon as possible. By the end of March, we were at UCSF Medical Center, where our daughter underwent a procedure to repair the blockage.
I don’t think I can convey how scary that time was for me. Before the procedure, I’d lie awake nights listening for irregularities in her breathing. I was terrified that she’d develop cyanosis, a common result of valvular heart diseases. Because congenital heart defects are so common, I know I’m not alone in stressing out like this – in a 2012 review of 25 studies, Priti Desai and her colleagues at East Carolina University found that parents of children with congenital heart defects report “a great deal of stress” throughout their health care experience. A great deal of stress. That pretty much sums it up. And the stress isn’t just about the CHD itself. It’s reasonably common knowledge in the CHD community (and well-supported by numerous research studies) that infants who undergo surgery for CHDs tend to have poorer cognitive, motor, and emotional development outcomes compared to their non-CHD counterparts. Now there’s something for parents to stress out about.
My experience really was the best-case scenario. Our midwife caught the irregular heartbeat immediately. Our pediatrician referred us to a cardiologist – immediately. Our cardiologist sent us to UCSF, one of the best medical facilities in the nation, even though my daughter’s procedure could have been done here in Sacramento. And every single health care professional we interacted with was knowledgeable, respectful, kind, and, well, professional. It couldn’t have been better. And now, my daughter is fine.
That’s the way it should be for everybody, really. And increasingly, it is that way for LGBTQ people. If you look at research studies from the 1980s and 1990s, the data paint a really dismal and ugly picture. Doctors, nurses, and medical students expressed outward hostility and disgust towards LGBTQ people. Most felt that patients should keep their sexual orientation to themselves, and not mention it to their health care providers. And, as a result, many LGBTQ people just didn’t go to the doctor on a regular basis – because who wants to be the victim of homophobia or transphobia, especially while wearing a paper gown in the doctor’s office? Today, the research tells a different story. More lesbian, gay, and bisexual people come out to their health care providers, and most report positive health care experiences. Increasingly, providers are receiving training about transgender health care issues, and while many transpeople still experience the doctor’s office as hostile territory, there is positive movement happening on that front. And according to a large-scale literature review published in 2012, LGBTQ parents seeking health care for their children generally appear to have a good, respectful experience.
However, a question posted by a friend on Facebook got me thinking about why LGBTQ people might be having more positive experiences. Here was her question:
I was perusing the Kaiser website and found this: “Are You Gay, Lesbian, Bisexual, Transgender, or Questioning? Kaiser Permanente can help connect you with a doctor who is supportive and knowledgeable about gay, lesbian, bisexual, and transgender health issues.”
Are they saying that they know most of their doctors are not supportive and that’s okay? Let us direct you to the few who are supportive. Are LGBT health issues really that much different than anybody else’s?
One of the reasons LGBTQ people are having better health care experiences, according to researchers, isn’t just because doctors are becoming more informed and accepting. In large part, it’s because we do our homework. We know that NOT all doctors are supportive and knowledgeable about gay, lesbian, bisexual, and transgender health issues – so we go out of our way to find the ones who are. Years ago, when I first moved to Sacramento, I chose the short-haired female OB/GYN whose computer profile indicated she was a Sacramento Monarchs fan – because that’s all the information I had to go on. (My gay-dar, by the way, was completely on target with that one.) When I was pregnant, I had a different OB/GYN who wasn’t particularly accepting of LGBTQ people (among other things) – so I ditched him and chose to work with a midwife. When we were choosing a pediatrician, we pored through numerous online doctor profiles and chose the one (the ONLY one) who specifically said she was knowledgeable about LGBTQ issues. My patterns of choosing doctors seem to fit with the research – a 2011 study out of Michigan State University shows that, in addition to disclosing one’s sexual orientation and having open and supportive communication, a patient’s ability to choose their health care provider was the strongest factor in predicting positive health care experiences.
But you can’t always choose – which brings me back to my friend’s Facebook question, and to our CHD experience. I could choose my midwife. I could choose my daughter’s pediatrician. But once there was an identified health issue, a specialist was brought on board – and we couldn’t choose the specialist. In fact, in our case, the pediatric cardiologist who worked with us was the only one in the entire Kaiser Northern California region. It was him or nobody. And if he (or anybody else involved in my daughter’s care) wasn’t “supportive and knowledgeable” about LGBTQ people, then we were screwed. For that reason, all health care providers need to be trained in working with the LGBTQ community – because all providers are inevitably going to work with LGBTQ people. Or children of LGBTQ people.
CHD Awareness Week kicked off on February 7th, and ends (not coincidentally) on February 14th. If you want to learn more about it, go to http://www.tchin.org/aware/.