Q&A with Dr. John A. Harris, Director of The Center for Women with Disabilities

Dr. John A. Harris, a specialist in obstetrics and gynecology and a faculty clinician at the University of Pittsburgh Department of Obstetrics, Gynecology & Reproductive Science, believes conversations about reproductive goals should be a routine aspect of gynecological care for all patients with disabilities.

“I’ve talked to people in their 50s who wish someone had talked to them about this during their reproductive years,” he says. “I think having this conversation is super important. I try to be very optimistic and to explain that an obstetrician’s job is to work with people to get them to where they want to be. A lot of doctors who don’t know anything about pregnancy send negative messages to these patients.”

Since 2018, Dr. Harris has served as the director of The Center for Women with Disabilities at UPMC Magee-Womens Hospital in Pittsburgh. The clinic — which features patient lifts, accessible scales, adjustable examination tables, and specially designed stirrups for leg spasms — was founded in 2001 to provide barrier-free healthcare for women with physical and intellectual disabilities. Currently, about 30 percent of its patients live with mobility disabilities, including those caused by spinal cord injury, cerebral palsy, Friedreich ataxia, and spina bifida.

Dr. Harris spoke with the Reeve Foundation about the importance of preconception health, what to know about pregnancy and paralysis, and how healthcare providers can provide accessible care.

What should people try to think about and do, if possible, to prepare for pregnancy?

Connecting with all your providers before pregnancy is super helpful. We’re trying to optimize people’s health beforehand, so we want to get everybody on the same page. Sometimes we can get people to connect with providers that they maybe haven’t used, or haven’t used as much, that can be very helpful throughout pregnancy, like a physical medicine and rehabilitation doctor.

Talking about infertility is helpful if you are thinking about pregnancy. Not everyone can get pregnant easily, or maybe their partner might have a spinal cord injury, which might lead to some other issues with being able to spontaneously conceive.

It’s also nice to read pregnancy stories and start thinking about parenting. I know a lot of people may not have a lot of peers, or they didn’t grow up in a family where they saw parenting with physical differences. I usually point people towards social networks and Facebook groups; I suggest Wheel Mommies a lot. That’s kind of a classic, and my patients tell me it’s a very diverse, big group with a lot of experiences. So that can make it a little bit more accessible rather than feeling like, ‘Ok, I just know a few people that are different than me.’”

How do you suggest finding OB-GYNs to care for pregnant patients with spinal cord injury and paralysis?

I would say to start with hospitals that care for more complex situations. So, larger hospitals in larger cities, or the kind of hospitals that receive patients from other areas. They are more likely to be used to complex pregnancy planning and things like that.

You’re looking for a group where there’s a lot of special situations that are going on in the practice. You want to meet doctors and ask how comfortable they are with your care. Hopefully, they’ll be honest. Maybe they’ll say, ‘Well I haven’t personally cared for those patients before, but you know, I’ve reviewed the literature, and we can absolutely do this.’ I would hope they would be pretty flexible.

So, I think that starting with that group of doctors would be helpful, and then hopefully getting someone that’s really excited about it.

What paralysis-specific challenges should people be aware of during pregnancy?

Urinary tract infections are going to be more common. For people that have spasticity, they’re going to have more in pregnancy. We want to think about managing the risk of blood clots. People are more likely to have blood clots during pregnancy. That’s true for all pregnant people. But there is some research and there are some studies that say that people that use a mobility device, like a wheelchair, and have a mobility disability diagnosis and are pregnant, have a higher risk of blood clots in pregnancy.

With weight change, we’ll be thinking about functional change: How does it affect independence and mobility and being able to do activities of daily living? Some people do have lower levels of independence during pregnancy because their center of gravity changes. They don’t feel comfortable transferring and things like that. We’ll think about how weight gain affects skin health and whether they need any changes to wheelchair fit.

We will be looking to manage autonomic dysreflexia (AD), which is typically more of a challenge in the third trimester. That’s when there’ll be enough stimulus that it can become an issue and that’s super problematic, because it looks just like preeclampsia.

Can you talk more about the importance of distinguishing between autonomic dysreflexia and preeclampsia?

You have shared symptoms of headaches, high blood pressure and just feeling off. But there are ways to differentiate.

Preeclampsia usually shows up slowly over time: blood pressure will slowly increase. Autonomic dysreflexia tends to be an acute change: everything is fine and then, all of a sudden, blood pressure is high.

So, if AD is related to contractions, they’ll have high blood pressure during the contractions and then their blood pressure will go down without the contractions. The symptoms are related to the contractions. Preeclampsia symptoms are not related to contractions. They will just have high blood pressure all the time.

Laboratory tests will also be different. In preeclampsia, people’s kidneys lose protein and so we’ll notice this protein in urine that shouldn’t be present for people that are just having AD symptoms.

Treatment for preeclampsia is delivery, and avoiding eclampsia, which is a seizure condition. And treatment for autonomic dysreflexia is completely different. You want to stop or remove the stimulus that’s causing the problem.

It’s a hard thing to balance and we don’t want someone to have the complications of preeclampsia. What you really have to watch out for is preterm birth, where the baby’s going to have a longer time in the neonatal intensive care unit. We need to be very careful. Are we delivering because it’s preeclampsia? Or is this something that, with the help of physiatrists, we can manage for a few more weeks and avoid stimuli, and then get people into delivery.

Do you have any specific suggestions based on your experience caring for patients with paralysis?

My patients will often say there’s so much to talk about, just about the basic and routine things of pregnancy, that there’s not time in the visit to talk about how pregnancy is affecting independence or function or other nuances. It’s hard to have time to do all these things. So, sometimes it might be helpful to make more appointments just to cover all the things you want to talk about. Or think about seeing a physiatrist during pregnancy so you can talk to them, too. Physiatrist visits during pregnancy would cover 100% of the needs of a person with spinal cord injury, in most cases, because they’re just great generalists at function and in symptom management.

What advice do you have about postpartum care?

People need to plan for postpartum care. Labor and delivery are designed as much as possible to be very patient centered, but the postpartum side of things becomes very standardized. Everybody’s supposed to do everything a certain way. And the nursing staff isn’t usually set up to provide a lot of extra help.

I think the big thing to point out to healthcare providers is that, because of the stress and exertion of childbirth, whether it’s surgical or natural, they should expect a short-term loss in independence.

People should tell their providers, ‘I’m completely independent in my own home, but I think that after a C-section, I might need some help getting out of bed. I might need some help using the bathroom. I don’t want to have a catheter for a long time because I don’t want to get a UTI. I’m going to need extra help.’

You’re going to be fatigued. So, demanding a plan for extra help is pretty important.

And sometimes, you just have to remind the staff, that because of the Americans with Disabilities Act, the patient’s partner isn’t the one that has to provide this transfer or help. Now, people may feel more comfortable with their spouse or partner, but if not, the staff cannot complain about it. They provide the care.

When you talk to other healthcare professionals about patients with paralysis, what message do you try to convey about your work at the clinic and how to provide similarly accessible care?

Well, the ideal situation is that you wouldn’t need a specialty clinic, you would just get great care everywhere, right? Everyone deserves that.

I try to focus it so that it’s not like it’s “specialty care.” It’s more like if you had a patient with paralysis, you could do this. You find the big room in your office. You get some extra staff. You ask the patient what they need. And you support them. You can get it done.

For more information about the Center for Women with Disabilities, please visit their website.