Interviewed by Katie Sagaser, MS, LCGC

The road to pregnancy and childbirth can be a complicated mix of anxious anticipation, concern, and joy for anyone – but for those living with a disability, this journey can involve special considerations. I chatted with Lauren Brown, a first-time mama-to-be and Juno patient, to learn more about her experience with pregnancy and disability. 

Read on for Lauren’s story, including advice for others in the disability community who hope to become a parent someday!

Lauren’s personal story and relationship with disability

Can you share more about your personal story and relationship with a disability?

In August of 2005, I was a victim of a gunshot wound. I was 16 years old – wrong place, wrong time – and that left me with a spinal cord injury. I am a paraplegic – basically from the belly button down. Now, I’ve been in the chair longer than I was walking. 

That must have been a pretty surreal anniversary.

I normally make a point to celebrate it every year as a life anniversary. I take the time to look back and reflect on how far I’ve come and where I want to go in regards to my disability. It definitely was a big one when I realized I’d officially been in the chair longer than when I was walking.

I noticed you use the term “my disability.” There are lots of conversations about the words that people use to describe disability or people with disabilities. What terms are you comfortable with?

I’m comfortable with “disabled” or “disability.” I think that’s a good general term that most people can be comfortable with. My biggest advice to people who don’t have experiences with disabilities or don’t have a disability themselves would be to just ask the person – what would they prefer when referring to that person or a group of people with disabilities because everybody’s different.

Fertility concerns and risks associated with pregnancy

Do you have any memories of wondering what your disability would mean for your fertility?

It never entered my mind that I wouldn’t be able to be a mother. Of course, the insecurities come along with “will I be able to carry a full-term pregnancy” and childcare and things like that. I think that will be an ongoing struggle, and I’ll have to learn along the way - but I think that comes with motherhood in general, regardless of if you have a disability or not.

What were some of the things you may have Googled as you were thinking, “okay, I want to have a baby, and I’m a person who uses a wheelchair”?

Probably statistics on the percentage of women with spinal cord injuries, specifically close to my injury, who have had successful pregnancies. And then, what are the common risks that come along with it? So like, one of my concerns is AD, or autonomic dysreflexia, which is how anything in the paralyzed portion of your body, any pain or anything – you’re not able to receive that signal. It can cause a lot of complications with pregnancy – even when you’re not pregnant, it can cause a lot of complications for people with spinal cord injuries. That’s been one of my primary concerns.

Are you in the care of a high-risk OB specialist?

My next few appointments are going to be with the high-risk doctor – which gives me peace of mind just because they have the expertise. Whether it be diabetes, high blood pressure, or whatever – they’re more able to deal with emergencies.

Access barriers and special considerations for obstetric care

Have you encountered any barriers in your OB/GYN care now or in the past? Like where the clinic does things in a way that works for the 99%, but you’re the 1%? 

For the most part, it’s been good. One thing, where I’m getting my prenatal care, I don’t believe they have the wheelchair scale where you can just wheel on it and they subtract the weight of the chair. They just ask me what my weight is. I feel like it’s important! They talk about weight gain during pregnancy or what your weight was pre-pregnancy. I think it’s important to get those exact numbers. I can guess, but that’s not as good as if I got exactly weighed.

Right, because that also assumes that you have an accurate way to exactly weigh yourself at home.

Right, which I don’t.

With your high-risk appointments coming up beyond AD, are there other special considerations you really want to make sure you and your doctor discuss? 

I think just the basic, general stuff. I don’t have high blood pressure, but my blood pressure can be affected relatively easily, so I’ve worried about possibly having preeclampsia or blood pressure issues in the future. Probably healing after birth and things like that. Other than that, breastfeeding – you know, the common things that come along with giving birth. And then the postpartum issues of course, that’s definitely on my mind. 

I have talked to my doctor in the past about, you know, should I be able to deliver vaginally? I know that being induced and having a C-section is always a possibility and something that I might have to deal with. I’ve talked to other friends that are moms that have spinal cord injuries, and most of them have delivered vaginally, so that was reassuring. Because it’s important to me to try to deliver vaginally if I can.

Navigating pregnancy with a disability: discussions with other moms

It sounds like you have connected with moms with spinal cord injuries or other disabilities. What are those discussions like?

A lot of able-bodied people make the assumption, “why would they want to be mothers” or “it’s a disadvantage to the child,” or “that child’s going to go without ABC and XYZ.” A lot of people have a lot of negative opinions or preconceived notions about how mothering is going to go for people with disabilities. When the discrimination comes, it’s toward the whole population in general – whether you’re an amputee, or you use a wheelchair, or you have a developmental disability. I definitely think it’s a united mentality when it comes to that – just wanting to be seen as an equal and just like every other mom that’s just trying to figure it out.

What kind of advice have you gotten from other people within the disability community when anticipating those types of reactions?

You definitely want to try to grow a thick skin. Because you never know what people are going to say when you’re in public. People will walk up to you and say the craziest things. 

I’m starting to show a little bit, but when I have the full round bump, I know it’s going to open the door to more comments. I get looks and stares all the time just for being in the chair. If you look different or if you are different, you will get reactions.

It’s also important to have a voice and to be comfortable expressing how you feel about stuff, especially if someone's going to feel comfortable to come up and say how they feel about your life and what you can and can’t do. Be open to having a discussion with that person. Maybe you can use it as an opportunity to educate them on what they do and don’t know.

I know a lot of times there’s strength in community. Are you part of any organizations for spinal cord injury survivors or women in wheelchairs?

I have so many friends on Facebook - other women in wheelchairs and stuff. Even if I don’t know them personally, I love to just add them. If I see, oh, it’s another woman – especially if it’s a woman of color – that’s in a wheelchair, I just add them. Because whether it’s through their posts or whatever, you get to know them. It’s nice to have that familiarity and that bond of knowing what’s going on. I've always reached back and helped newly injured people figure out whatever, whether it be driving or going back to school, or navigating work. Whatever I don’t know, I try to figure out so I can help somebody else.

Overcoming negativity and preconceived notions about parenting with a disability

What kind of advice do you think you might give your 16 or 17-year-old self? 

There are going to be people who don’t like you based on what they see. There are a lot of great people you’re going to meet because of your differences and your struggles. You’re going to have a lot of great experiences because of the adversity you’re facing. Be strong, be vocal – definitely let people know how you feel. Don’t be a shrinking violet.

What do you hope that young people with disabilities hear about the potential to be a parent someday?

That it’s definitely possible. That there should be no doubt whatsoever – whether you want to naturally conceive a child, whether that’s IVF, whether that’s adopting – whatever it is, it’s possible. It’s very possible. I’d like them to know that anything they want to do, whatever plans you have for education, career-wise, trips, activities – there are ways. If you have a will, there’s a way to get it done. Definitely.

What do you wish OB/GYN providers and staff knew about pregnancy and disability?

Be warm, and pay attention to the way you come off to people. A lot of people don’t realize that whatever they’re thinking, it shows on their faces. Keep that in mind when interacting with others – especially with people who look different or people with disabilities. I've always felt good when a doctor doesn’t blink an eye and treats me like any other patient. That makes me feel good to know I’m just like anybody else.

What do you wish that the rest of the world knew about disability in general?

My cross to bear is a lot more obvious than other people’s, but we all have certain issues or shortcomings that we deal with. I think people should realize how much more we have in common than not. We’re human, just like anybody else that doesn’t have an obvious physical disability. And we’d like to be treated the same, and with the same dignity. 

 

We are so grateful to Lauren for being an open book and giving us the opportunity to be educated by her. Juno patients like Lauren are what makes the Juno community so beautiful, vibrant, and strong! To hear more from the Juno community, subscribe to the Juno Newsletter, where you'll get pregnancy tips, hear advice from experts, and have access to exclusive offers on Juno prenatal screening tests!

Want to show Lauren some love for spreading the word about disability inclusivity in pregnancy and parenting? Don’t be shy! Follow Lauren on Instagram: @melanin_qu33n_on_wheels 

 

Please be aware: JunoDx.com and the materials and information it contains are not intended to be and do not constitute medical advice, other health advice, or diagnosis.  Do not use JunoDx.com or the materials and information published at JunoDx.com as a substitute for medical care and treatment. You should always consult with a qualified physician or healthcare provider about your specific circumstances.