Ditch the popcorn and excessively large soda — starting a family on wheels takes a bit more thought than Seth Rogen’s on-screen character drunkenly spreading his seed in the movie, Knocked Up. We’re talking real life family planning — bun-in-the-oven style — for chair users. Whether it’s the old fashioned way, in vitro fertilization, surrogacy or adoption, there are many ways to grow a family.
Let me be clear: We chair users can carry our own children or get our partner pregnant. Let’s debunk the no-can-do myth right here, right now! However, sometimes those options aren’t feasible, available or safe. To each her own, including myself.
I’m 29, going on 30, and in a it-looks-to-be-going-there relationship. Regardless of where it ultimately ends up, I’d like a family of my own with my future partner. Not to mention, having kids is even more top-of-mind considering my age.
As a C7-T1 quad, I know I can physically carry a child, but I also know my individual body can’t handle the stress. I know me best, and you know you best. I know how my body reacts from just a UTI, throwing me for a dysreflexia loop and creating an antibiotic intestinal nightmare. I know my bladder diversion goes a little haywire just from bloating once a month. I see how sensitive my skin gets just from wearing certain clothing, causing me to go into protective skin mode. I know the intense spasms and elevated heart rates I get from surgery. And I also know how I hate having people help me with any more than they already do. Add a baby into the mix and all of that will only be heightened — not exactly how I envision carrying a child. I’m strong, but I also know my physical and mental limits.
Still, I’m not a doctor, and I wasn’t totally sure who to ask or what to expect. What information do I need to know in my own journey to parenthood? What hurdles will I face — physically, emotionally, financially? Is there something I should be doing now to ensure baby-making goes more smoothly in the future? Who the hell can answer these questions for me?
In my quest for answers, I spoke to a variety of chair users who had been through different processes or were in different stages of family planning. What I discovered was options, lots of them. And, coincidentally, decisions — lots of them, too.
The Traditional Way
Would I like to have a kid with my future husband the old fashioned way? Of course. Does it bother me that I can’t/shouldn’t have my own child? Definitely. Will it feel a little more sterile when we start our family? Probably. But in talking to others on wheels who faced these same questions, I do know this: The process is worth it for the right reasons with the right person.
When I spoke to Allison Vear, a 32-year-old T12 para, she had some of the same concerns for herself during pregnancy, especially in her third trimester. She conceived with her husband the traditional way, but that came after carefully mapping out the start of her family. Being on wheels and being a rehab doctor herself helped, as she knew the right questions to ask and what to expect.
“For my husband and me, timing was our main discussion. It was less about me carrying the child and my fertility,” she says. “Pre-planning and finding a provider that was also comfortable with me before I became pregnant was key. I wanted to talk through what I’d need and what would be different during the course of my pregnancy and delivery.”
Similarly to Vear, Joey McTigue, a C4-5 chair user from an auto accident, also hopes to go the traditional route with his spouse. While he can ejaculate, his orgasm rate is around one in 10, making it difficult to sync with his wife’s ovulation schedule.
They’re currently giving the old fashioned way about a year, in hopes of not needing additional outside help. But they’re also being realistic about what may need to happen in the future and how not getting pregnant during ovulation can be disappointing.
“My wife and I communicate well. It’s one of the most important pieces of an open and comfortable relationship,” says McTigue. “To be responsible future parents, we need to talk about the process and keep talking about it. We can reevaluate as we continue and change our timeline if we need to. Every situation is unique, including ours.”
If the traditional route does not work out, the McTigues may consider an alternative way forward, such as in vitro fertilization. This is what David Jones, 33, and his wife have done.
Just a Little Bit Different
Jones, a paraplegic from a gunshot wound to his thoracic vertebrae, spoke about starting a family with his wife of 10 years. “We can still accomplish the same goal [of having kids] — it’s just a little bit different.”
Jones, who was a dad-to-be during our initial chat, researched different treatments, processes, and challenges via other chair users and online resources. He and his wife decided to start with the least expensive and least invasive methods first. More to come on the financials, but this is a smart start to putting a baby on board.
Anejaculation (the inability to ejaculate during sex) and sperm motility are issues many males with SCIs face. For Jones, sperm count was good to go, but motility was slower.
After intrauterine insemination and a few non-SCI complications during the process, he and his wife ultimately ended up conceiving via in vitro fertilization with his sperm.
The decision to pursue IVF didn’t come lightly, as they made a significant financial investment to not be limited to the number of insemination attempts. Depending on your insurance, financial standing, and other factors, you may only have a certain number of times you can keep doing IVF.
Important tidbits to know up front: You can choose masturbation, penile vibratory stimulation, and/or electroejaculation to get a semen sample for whatever assisted reproductive techniques you and your partner choose. However, if your tadpoles are not viable, getting a donor from a sperm bank is another option.
Check out the Miami Project’s in-depth look at how dysreflexia plays a role in these processes, as well as your options for assisted reproductive techniques at www.themiamiproject.org/wp-content/uploads/2015/07/male-fertility-booklet-2010-lowres.pdf. Also read about Glen and Monica Dick’s epic journey to parenthood in “Fathering Elaina,” found after the main story at newmobility.com/2011/02/anything-for-baby/.
Some Other Options
If getting pregnant and carrying a baby isn’t possible for you or your partner there are other avenues, such as surrogacy. Two types exist, each with its own laws and regulations by state: traditional surrogacy, where the surrogate mother is artificially inseminated with the father’s or donor’s sperm; or gestational surrogacy, where the egg from the biological mother is removed and fertilized with the sperm of the father or donor and carried by the surrogate.
Harvesting your eggs may seem a little bit scary since the fertility drugs can have side effects or put undue stress on your body. Plus, retrieving the eggs after ovarian induction — the process of using hormones to stimulate your ovaries to produce multiple eggs — may also cause dysreflexia.
Adoption is another approach. Hopeful parents with disabilities can face a number of obstacles, including discrimination and prejudice when headed down this path. However, many prospective parents with disabilities have chosen this route, so the path is much easier than it used to be. When considering international adoption, you’ll need to be mindful of certain countries having age, marriage and disability restrictions. Domestic adoption and foster care may have their own limitations or require extensive advocacy, but they can be alternative routes.
For a deeper dive in all things adoption, check out “Disability and Adoption” at www.spinalcord.org/disability-and-adoption-building-a-family/.
Communication and Costs
Beyond the mechanics of getting knocked up or choosing an alternate approach, the emotional side of planning your pregnancy can be trying. The extended period of time for research, procedures, tests, surrogate searches, insemination attempts, legal paperwork, and IVF attempts may be taxing. Additional stress, pressure, and roadblocks aren’t easy, which is why having a strong partner, solid support system, and involved medical staff makes all the difference.
“The biggest thing is being up front and honest with your partner. Talk to your spouse and come up with a plan. Talk through some of the seemingly negative things and make sure you’re on the same page. Once you have a unified, strategic plan, the rest is just execution and tactics,” says Jones. Both he and Vear concluded that initial plans may need some readjusting or additional help as the process develops.
Being in tune with each other’s comfort levels, expressing your feelings, and being nimble enough to rearrange “the plan” all play into the emotional pieces of beginning a family. As a control freak and expert planner, this is an aspect of family planning I know will be hard for me. However, knowing it now will help me prepare for the future.
Cost is also an important piece of the pregnancy puzzle. Every case is very much one of a kind, but some ballpark costs put it into perspective.
- Initial tests, procedures, equipment, treatments: Upwards of $3,500, maybe more depending on the couple and methodology.
- Sperm donors: $400-$700 per vial.
- IVF (may or may not include medication costs): $12,000-$20,000 per try.
- Surrogacy (agency costs, lawyer fees, insurance, surrogate, etc.): $100,000-$120,000.
- Adoption: $38,000-$48,000.
That’s a lot of cash to have one kid, or two depending on the treatment, especially when many people want to grow their family over time. Insurance plans may cover the cost of some of these treatments and methods, or offer more reasonable prices than an out-of-pocket approach, but there can be limitations, loopholes, and uncovered options. It’s best to make a phone call to work through your individual insurance setup.
Payment plans, nonprofits to help with surrogacy costs, and other means of assistance do exist. Start a GoFundMe page if you need to. If having a child is something you and your significant other want to do, try to make it happen with any and all channels.
As Jones says, “Fortunately we were able to budget for our pregnancy. Our doctor offered discounts for cash payments and had tiered pricing for various IVF cycles. Everything was very detailed and took a lot of consideration — do some shopping around to pick the best doctor you can possibly find, and then consider the financial component.”
Ready? Set? Family!
If all of this hasn’t scared you off yet, then you might be ready to be a parent. Parenthood is both costly and scary, whether on or off wheels. However, having a disability and tackling the intricacies of family planning certainly generates its own considerations and can cause extra hurdles.
My best advice? Talk about it! The more people I spoke to, the more comfortable and knowledgeable I became on the subject. Read blogs, comb through medical research, hit up disability forums and resources. Reach out to people who have been through the process.
Just as many of us share our story about our disability or how we were injured, people on wheels are usually open to sharing what to expect when expecting — and before the actual pregnancy as well.
I’m still in the before stage, but from my research and conversations thus far, I landed on gestational surrogacy as my method of alternative family planning. I would prefer biological kids. Also, I understand the process isn’t foolproof or painless, so I have to be open to changing my course or to some short-term medical monitoring and discomfort. By being more prepared now, I’ll hopefully be able to plan ahead for me and my partner.
My boyfriend jokingly claimed, “With a stoic demeanor and impeccably good looks, he listened as she outlined our options.” I laid it all on the line when he initially asked because I know the road to having a baby of my own won’t be easy, albeit worthwhile. I need a partner by my side who can be an equal and supportive counterpart — I’m not willing to compromise on any aspect of that.
Will I ensure he reads this article? You bet. Will he have more questions afterwards? Most likely. I do, too! There’s more to learn about my specific plan because each approach is individualistic. But most importantly to him, will he love the part where I mention his self-proclaimed good looks? Absolutely.
Let’s hope our future kids have a little more humility than he does.
• Disabled Parenting: Blogs, Resources, Adaptive Parenting Equipment; www.disabledparenting.com
• “Disability and Adoption,” www.spinalcord.org/disability-and-adoption-building-a-family/
• “Fathering Elaina,” found after “Anything for Baby” at newmobility.com/2011/02/anything-for-baby/
• Initiative for Women with Disabilities, NYU Langone Medical Center; nyulangone.org/locations/initiative-for-women-with-disabilities
• Male Fertility, The Miami Project; www.themiamiproject.org/wp-content/uploads/2015/07/male-fertility-booklet-2010-lowres.pdf
• Parenting After SCI, etc., United Spinal Association Research Center; www.spinalcord.org/resource-center
• Sexual Dysfunction Clinic for Men, Shirley Ryan AbilityLab; www.sralab.org/services/sexual-dysfunction-clinic-men-sci