What do we know about the pregnancies of women with disabilities? Not nearly enough, says Caroline Signore, M.D., an obstetrician/gynecologist and deputy director of the NICHD Division of Extramural Research.
Research so far indicates that, while there may be some potential risks, most women with disabilities will have unremarkable pregnancies—and that’s a good thing, meaning their pregnancy outcomes are good.
In this interview, Dr. Signore talks about current knowledge about pregnancies in women with disabilities, and NICHD efforts to encourage research in this area.
Watch Dr. Signore discuss this research.
A text alternative is available at http://www.nichd.nih.gov/news/profiles/researchers/signore/Pages/transcript.aspx.
Select a link below to read Dr. Signore’s extended comments from an interview held in Maryland in July 2014.
A Big Population
Challenges of Pregnancy
Initiating Research Efforts
Identifying Research Questions
Finding a Doctor
Becoming a Parent
A Big Population
Q: How many women of childbearing age have disabilities?
Dr. Signore: The United States Census estimates that 11% to 12% of women of childbearing age consider themselves to have a disability of some type. There are 1 million women in the United States of childbearing age who need assistance with some of their functional activities of daily living. That could be a fairly substantial number of women with disabilities getting pregnant, but we have very little information about the specific number of women with disabilities who become pregnant.
And by disability I mean physical or mobility disabilities, intellectual or developmental disabilities, and sensory disabilities, such as vision loss or hearing loss.
Women who identify as “disabled” most often report a physical limitation, often due to arthritis or back problems. There are other conditions associated with mobility impairments, such as spinal cord injury and multiple sclerosis.
Q: Are women with disabilities less likely to choose to become pregnant?
The research that’s been done so far suggests that women with disabilities may wish to become pregnant, but some opt not to. The most common reason women cite is not having enough personal or social resources to manage pregnancy.
But I do want to say that women should feel reassured that having a disability does not necessarily mean that they’re going to have a complicated pregnancy. Most women with a disability will have a successful pregnancy.
Challenges of Pregnancy
Q: Are there particular pregnancy issues that women and their providers are most concerned with?
The issues for women with one type of disability may not be the same for women with other types. So for example, when a mobility disability is present, physicians and patients need to think about a certain set of barriers and how to address them. When a woman with an intellectual disability wants to become pregnant, different issues arise for her. And so one of the things that concerns physicians is getting enough knowledge to provide the most appropriate and sensitive care.
For women with physical disabilities, a unique challenge they may face is their ability to manage weight gain. Some women may gain enough weight that they need a larger wheelchair. One thing that women who use wheelchairs are always concerned about is pressure sores, or breakdown on the skin from being seated. And with increased weight, that can be a problem for people who use wheelchairs.
For a woman who has difficulty walking, gaining weight during pregnancy can change her center of gravity. That can cause a lot of fatigue, more difficulty walking, and she may need to start using a wheelchair during pregnancy simply because of the extra weight and the changes in the shape of her body as the fetus grows.
We also worry about—but need more research to define—the risk of blood clots among women with mobility impairments during pregnancy.
We also know that women with disabilities, in general, report feeling higher amounts of stress and mood disorders than women without disabilities, and this may be an issue during pregnancy. There’s research showing that stress and mood disorders can have an influence on pregnancy outcomes.
There are certain conditions that are associated with disability that do require special management during pregnancy. One thing that most obstetricians will learn in the course of their training is that some women with spinal cord injuries may develop a very dangerous condition during labor called autonomic dysreflexia. When women with spinal cord injuries experience a painful stimulus such as labor, their body reacts with an abnormal increase in blood pressure. That can be a very dangerous situation for both the mother and fetus, and so that is something that obstetricians are pretty aware of and will be careful to monitor for and manage when women with spinal cord injuries are in labor.
But with all of that said, it is important to say that studies show that most women with disabilities have good pregnancy outcomes overall.
Q: Studies show that women with spinal cord injuries are more likely to deliver via cesarean section. Do you think it is possible that physicians are afraid to let these women try a vaginal delivery?
Yes, I think there may be some truth in that. There are a lot of unknowns when working with women with disabilities during pregnancy, and I think health care providers do what’s most comfortable for them—and unknowns in medicine are uncomfortable.
There’s very little research to guide clinicians when they want to advise women who’d like to get pregnant or who are pregnant. And why might that be? I think maybe it’s partly related to an attitude that women with disabilities couldn’t or shouldn’t get pregnant. And so this has not been an area of high-level investigation, because it just wasn’t something that reached the consciousness of researchers.
But we know that the number of women with disabilities in their reproductive years is increasing, and I think the more we can shed light on this topic, the more informed and sensitive our caregivers can be in delivering care for women who really want to start a family.
Initiating Research Efforts
Q: In 2010, you organized a conference to help identify research to improve understanding of pregnant women with disabilities. What areas did you identify?
A key output from that workshop was the development of a summary published in one of the major journals. I think that paper was important because it announced to the field that this is an issue that’s here to stay, and the NICHD took a lead in calling attention to it.
One of the main suggestions was that there should be a systematic way that information about pregnancy experiences and outcomes among women with disabilities should be collected, much like how birth certificate data is collected. Rather than having these cases examined one by one, put all of the information together so that we can have a much clearer picture of what to expect during pregnancy among women with all sorts and severity of disability.
I think this would be very important in informing the field about where the barriers and risks might be and in identifying ways to manage those barriers and risks.
We followed up by issuing a call for research on all kinds of issues related to pregnancy and disability. We’ve had a very encouraging response, and we’ve actually started funding research in this area, which really is a new field for NICHD and for NIH in general.
Identifying Research Questions
Q: What types of issues is the NICHD interested in studying?
We have very little information on these very basic features of the field, so one important thing is to understand who we need to serve. How many women in the United States are affected by these issues? How many women with disabilities desire pregnancy? How many women achieve pregnancy? What are their experiences? What are their outcomes? How are they doing after they deliver?
We want to know a lot about risk factors so that we can understand why certain outcomes occur, and then develop treatments and interventions to try to prevent poor outcomes or reduce risk.
We are very interested in developing developmentally appropriate guidelines and care plans for women with intellectual and developmental disabilities so that they can participate fully in their own medical decision making and get the support they need during pregnancy and after delivery.
We’re very interested in understanding the experiences of women with vision or hearing loss. They may not physically have any more difficulty with pregnancy, but they may face a different set of challenges that we need to understand so that we can provide more sensitive care.
Q: And are there efforts underway in all these areas?
All of these topics—and many others, including what our investigators identify as important gaps in the field—are listed on our calls for research. By making these calls for research, we’re hopeful that the field will continue to become energized.
We’re very early in this cycle for this new and growing field, but it’s very exciting. It’s a beginning for a topic that hasn’t been studied as much as it should have been in the past. There have been studies, but they have been small—13 women here, or maybe 10 women there—and that’s very interesting, but it’s difficult to make strong scientific conclusions on small groups of women.
That is why the conference proposed systematically collecting information about pregnancy experiences and outcomes among women with disabilities. The more information we collect, the more confident we can be in the results that it indicates to us.
Q: Is there any research that has kind of ...
Rocked the field? I'm hoping, but we haven’t been rocked yet. Many of these grants were issued just in the last couple of years, so we’re eager to follow those up and see their results.
There was a lot of call for understanding mechanisms—if there are adverse outcomes associated with disability, why do they occur?—because only by understanding why can we start thinking about ways in which to prevent them.
Q: How many grants have you awarded?
We’ve awarded four so far and are confident that there will be more to come. We’ve had more than 30 applications, which is really exciting considering this is a field that NICHD and NIH haven’t really delved into. So I’ve been very encouraged by the response from the research community, and I look forward to this growing body of research. We are going to reissue these announcements so that the initiative and the impetus can continue.
Finding a Doctor
Q: What is the best way for a woman to find health care providers and hospitals that have experience managing pregnancies among women with disabilities?
It can be, unfortunately, difficult for women with disabilities to find health care providers or health care institutions that have a lot of experience in this field. Partly because it’s a fairly small population—not that many women with disabilities were encouraged to have children in the past—so the base of experience is somewhat limited.
There are no training programs that I'm aware of for physicians who take care of women with disabilities during pregnancy. I have worked with other organizations to disseminate educational information to professionals, but there’s still work to be done there.
And so for now the best advice is for women to talk with their friends and their acquaintances about what their experiences may have been. Sometimes finding an empathetic caregiver, regardless of level of experience, will lead to a very productive and meaningful collaboration.
In many ways, women with disabilities are the world’s experts on their own conditions. She can help manage her care by telling her health care provider how she expects her body to react to pregnancy, how she feels, what symptoms she may be experiencing. Together they can create a care plan.
In larger metropolitan areas, it is possible to find maternal–fetal medicine specialists who’ve seen more pregnancies among women with disabilities.
Another thing to try, and this can be challenging, is to encourage communication between the different doctors the woman has relationships with. For example, there’s a doctor who takes care of her condition that is causing a disability; there’s a doctor that takes care of the complications arising from the disability; and then there’s a doctor that takes care of pregnancy. A team can be built among them and other individuals to practice a team approach to pregnancy management.
Becoming a Parent
Q: Once the baby arrives, are there further challenges? Are there any specific to women with disabilities?
Taking on the role of being a mother or a parent can be daunting for just about anyone, and there’s no reason to believe that wouldn’t be the case for women with disabilities. A woman with a disability may have even more apprehension, concern, and uncertainties of bringing her baby home and wondering about how she’s going to manage everything.
Unfortunately, there have been attitudes in society that people with disabilities are unable to do much of anything, and that includes unable to parent. Women with disabilities should have the opportunity to have the full complement of resources and adaptive technologies and equipment that will help them be as independent as possible in parenting.
So for example, most cribs for babies have high rails for protection of the child, and a woman who is seated in a wheelchair may have a difficult time lifting a baby up, placing the baby over the rail, and safely down on the mattress. There are cribs now designed that have rails that open sideways so that a woman can easily transfer her baby right from her lap onto the bed. And it’s these kinds of technologies and supports that are crucial for women to have access to when any evaluation of their abilities is being conducted.
There’s no reason not to design things for maximum use by the maximum number of people. And things that make it easier for a person with a disability are usually easier for everybody else as well.
Q: Do you want to share any final thoughts on this topic?
Many women with disabilities report that when they tell their doctors they’re pregnant, they feel like their doctors are thinking, “Why would you do this?” That’s very demoralizing. I would really urge clinicians and society in general to view pregnancy in a woman with a disability with the same joy as in any other woman, because this is a beautiful thing.
These women are fully capable and engaged in becoming mothers, disability or not.
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