Baby on Board: Tips for the First Year of Parenting as a High-Level Quadriplegic


father in power wheelchair with two small children in his lap
Family is important to Josh Basile, and he has done everything he can to foster closeness.

Angie Hulsebus cherishes the special opportunities she gets to bond with her infant daughter, Penelope Joy. “I love when she lies on her tummy on top of my tummy,” she says. “We’ll look at each other, laugh together and I talk to her. I love interacting with her and giggling and kind of tickling motions that I can do.”

As a new mom and a quadriplegic, Hulsebus takes advantage of moments like this before tackling the less glamorous aspects of parenthood — the bathing, feeding and dressing, all of which are challenging.

We talked with Hulsebus and Josh Basile, a new dad who also has a high-level spinal cord injury, about their parenting journeys and the ups and downs they’ve faced during the first year.

Angie Hulsebus: Adapting Day-by-Day

Having kids was never at the top of Angie Hulsebus’ priority list like it was for some of her friends. That didn’t change when she sustained a C5 injury in a motor vehicle accident while in college in 2003, or when she married her husband, Michael, in 2014. “Some people are super-excited to have babies. I was never one of those people. I was just like, ‘Well, I’m sure it will happen someday.’ I was more education- and career-focused,” she says.

Someday came July 13, 2022, when Hulsebus, 40, gave birth to Penelope Joy. While a spinal cord injury can cause some complications during pregnancy, Hulsebus had an easier experience than she expected. “It took us a while to get pregnant, but we did not do in vitro (fertilization) or anything like that. We were actually pleasantly surprised at how the pregnancy went. My body seemed to react pretty well.”

Black and white image of mother smiling down on baby on lap
Angie Hulsebus has found ways to maximize her time and interaction with Penelope Joy, whether she is in or out of her power wheelchair.

She was able to avoid bed rest, in part by adjusting her power chair to sit more comfortably during the third trimester. Other than that, and a little autonomic dysreflexia, her pregnancy was relatively trouble-free. The hard part began when Hulsebus had to adjust to taking care of her newborn.

The biggest challenge was that she lacked the hand strength and dexterity to tackle some common parenting tasks like changing diapers, dressing and transferring Penelope. In search of adaptive devices to make things easier, Hulsebus turned to the assistive technology center at a local Easterseals chapter in Iowa, but they didn’t provide many resources. When she talked to other mothers in wheelchairs, they couldn’t offer much advice since they had lower levels of injury.

But with help from her husband, extended family and caregivers, Hulsebus has been adapting to challenges as they come, one day at a time. The struggle to do so reminds her of what she faced post-injury. “After a spinal cord injury, we have to relearn how to do everything and how to live differently. This is just another aspect of that. As a new parent, I don’t have anything to compare my experience to. I’m just making it up as I go.”

Over the last six months, she and Penelope have found their own ways to work together, connect and bond. “I put a pillow on my lap to help bottle-feed her and I did nurse her for a while — I would just need help positioning her in a way that was comfortable for us both.”

One tool that has helped Hulsebus hold Penelope in the wheelchair is the Primo LapBaby, a seating aid with a soft strap that goes around the waist and back. The product wasn’t made specifically for people with disabilities, but it allows both mother and baby to feel safe and comfortable while in motion.

And while the pair has figured out ways to adapt activities for a seated position, Hulsebus says she’s enjoyed connecting with the baby out of her wheelchair. “I feel like I have more abilities when I’m sitting in my bed, just because it’s a larger surface so if she is slightly off my legs, she won’t fall. I feel safer and more mobile with her in bed versus my chair,” she says.

At first, Hulsebus was worried she would struggle to connect with her daughter because she cannot physically get down on the floor and play with her, but this fear has subsided. “I still have a small worry about this, but nothing compared to how worried I was when I was pregnant. As Penelope changes, so does how we interact. But I know she knows my voice and my face, and when she smiles and giggles it makes all my worries disappear.”

Bedtime is special because Hulsebus is able to help rock her to sleep by leaning back and forth and using her arms to gently move Penelope up and down. “It is pretty precious to me. Because I feel like, ‘Oh, I did the mother thing, right? I rocked my baby to sleep.’”

While Hulsebus has adapted to many aspects of parenting, she counts on family and friends to fill in the gaps. “I do as much as I can, and my husband fills in the rest. My parents are a huge help. My caregivers also help take care of the baby while they’re taking care of me. My husband’s parents, a few neighbors and a couple of friends also babysit when needed. As they say, it takes a village.”

She says communication and organization are the keys to success. “If you and your partner are on the same page, you become a much better team. When my husband is busy working, I dictate what she needs to whomever is helping me take care of her, like, ‘OK, well, she needs her bottle right now,’” she says. “I am a very organized person. I feel like that is a huge asset. I can help keep everyone organized and where they need to be at what time.”

Scheduling doctors’ appointments, meetings, caregivers, babysitters and volunteer commitments are just a few of the things that Hulsebus keeps track of. Knowing when and where everyone has to be helps keep the ship sailing smoothly.

Although parenting with a high level of injury has its challenges, Hulsebus is excited for what’s to come. “I think it’ll be great when she is mobile and we can go on walks together and play in the yard, and we can be out in the community more. I think kids learn a lot as they grow up, and giving them exposure to all abilities makes them more well-rounded.”

While Penelope still has a few years before starting kindergarten, Hulsebus is already thinking ahead about the accessibility of the schools. “I hope that I’ll be able to fully participate in whatever activities she chooses. If it’s a matter of environmental and physical barriers, hopefully I’ll be able to change those for myself and for others with disabilities.”

Adaptive Baby Care Products

PRIMO LapBaby securely supports your baby on your lap with a clever strap system that allows you to keep your hands free. $34.95

Easy Magnetic-Close Footies and Pajamas snap together with magnetic closures for easier changing at bedtime. $17.99.

Babybay Bedside Sleeper allows for safe co-sleeping by combining a crib with a bedside sleeper that securely attaches to your bed. Starting from $245.

masked mother in wheelchair holding a baby on her lap
The Primo LapBaby keeps Penelope Joy secure as Mom rolls around town.

Podee Baby Bottle Feeding System makes upright, hands-free feeding possible with a flexible tube that connects a bottle to a silicon feeding nipple. $14.99 for a two pack at Amazon.com and Walmart.com.

Orbit Baby Car Seats rotate 90 degrees to make it easier to get your infant or child out of the car. Starting from $480.

Baby K’tan Baby Wrap Carrier keeps infants close with a double loop design that is easy to get on and keeps your baby safe and secure, hands-free. $59.95 from many online retailers.

Chicco Quickseat Hook-On Chair attaches to a table or counter, allowing wheelchair users to get closer to their infants during feeding time. $79.99.

MamaRoo Bluetooth Baby Rocker swings and rocks your baby using Bluetooth and voice control. $269.99.

UnbuckleMe releases your baby’s car seat straps with the push of a palm. $14.99.

Baby Blendy Bottles mix formula, breast milk, baby rice cereal or baby oatmeal with push of button, reducing strength demands as you don’t need to shake the bottle. Single bottle kit from $66.90 (though often on sale).

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Josh Basile: Committed to Closeness

Josh Basile has dedicated his 19 post-injury years to supporting wheelchair users as the founder of nonprofits Determined2Heal and SPINALpedia. He’s a United Spinal Association board member and also supports the disability community in the courtroom as a medical malpractice attorney. Last February he started a whole new type of support role when he and his partner, Katie Fava, had their son, Calder.

Basile, 37, a C4-5 quad, met Fava four years ago through an online dating site. There was a spark right away. A year later, the pandemic hit, and they hunkered down in their small apartment, along with Fava’s daughter, Faeble.

Rear view of man in powerchair looking at baby in carrier smiling back at him
Basile collaborated with engineering students at Johns Hopkins University to create a baby carrier that allowed him to connect with Calder more intimately.

They knew they wanted to commit to one another, though they couldn’t get married without Basile losing his caregiving benefits. They bought a house together, and decided they wanted to have a child. After a year of IVF, Calder was born.

“There’s a whole new world of trying to figure out how to contribute and be a part of this new environment,” says Basile on his adjustment to parenting. “(Babies are) limited in what they can do, and from a physical standpoint I’m also limited in what I can do.”

Basile has limited arm function. He operates his power chair by joystick once his hand is placed on it, and he uses head controls to turn the chair on and off. He turned to other “quadfathers” for guidance on how to navigate parenting with a disability.

One of the struggles they talked about was the difficulty in getting close to and bonding with the baby. “They emphasized time and time again that the babies vocally wanted their mother who could physically hold and rock them,” he says. “Babies are always trying to move around, and it’s hard [when you can’t hold them]. So much of parenting in the beginning is physical.”

One quadfather with limited movement in all four extremities told Basile about how he learned to use his mouth to help carry and change the baby by adapting different garments and clothes. “That showed me: You’re going to do it — it’s just a matter of figuring out how. You have to be willing to keep trying different scenarios.” Basile was motivated to find a way of holding Calder in a baby wrap, so he strapped a 10-pound bag of flour to his chest to simulate the weight and make sure it was safe for both him and the baby.

Adaptive devices and technology have also been instrumental in Basile’s independence as a father — and when the technology he wanted didn’t exist, he set out to change that. He collaborated with engineering students at John Hopkins University to create a baby carrier that allowed him to connect with Calder more intimately and take him on walks. “It’s great to be able to have the ability to have Calder in front of me and to be able to have the face-to-face connections.” he says. “Being able to get as close as possible to the little guy is something I’ve always found to be special.”

Rear view of man in powerchair looking at baby in a high chair smiling back at him
A hook-on high chair allows Basile to roll right up to Calder.

Basile recommends using cloth crossbody baby wraps to allow for more closeness and hands-free bonding. “The crossbody wrap allows my son to be secured to my body with a very forgiving and soft fabric. It is special for him to hear my heartbeat and for us to share each other’s warmth and body scents.”

He finds hook-on high chairs that attach to a table or countertop to be practical. Basile is able to roll up right next to Calder when he is playing with toys or eating.

He also highly recommends a Bluetooth-powered baby rocker. “I searched far and wide on the Internet for smart infant tech that could be controlled by my phone.” He chose the MamaRoo baby rocker. “It was perfect because the app actually worked with Apple Voice Control, and I could independently control multiple rocking modes with just my voice.”

Basile also received an opportunity to try a new smart retainer called MouthPad. It has a tongue touchpad, sip and puff sensors, and the ability to understand bites and head movement in all directions.

“I am now the fifth quadriplegic in the world to test out their product. The MouthPad fits comfortably in my mouth and I now can control my computer and most importantly my phone with precision touch. My tongue transforms into my pointer finger and I now can tap and drag anywhere on the screen.”

The device has improved Basile’s independence in multiple ways, including his ability to connect with his 5-year-old daughter Faeble. He now plays online games and reads digital books before her bedtime by flipping the pages hands-free.

“One of my favorite things about the MouthPad is that it is hidden. A lot of other technology that exists has to go over your face, eyes, and head, or has to be mounted in front of you. The MouthPad provides independence while being hidden and out of sight.”

And while peer support and finding the right tools have been important, his partner plays the largest role in Basile’s ability to parent. “The rock star of the family is Katie. She is the glue that keeps this family together and living and thriving. Sometimes the best way I can support the baby is by supporting Katie and being the best partner that I can possibly be,” he says.

Basile’s caregiver and family are often involved in Calder’s care, taking some of the load off Fava. “A lot of times I go on daddy duty where I’m looking after the baby with the help of my caregivers.” Calder is lucky to have Faeble as a big sister too. “She can make him laugh louder than anyone in the world. He lights up every second she’s in the room. It’s awesome to see that dynamic between them.”

Basile is looking forward to watching him grow and creating new memories and milestones as a family. But for now, like Hulsebus, he loves taking in the little moments in the morning before the daily grind begins. Fava brings Calder to the bed, and the three of them play peek-a-boo, smile and giggle together. “It’s the best way to wake up.”

United Spinal’s newest virtual support group, Rolling Into Parenthood, meets on the second Wednesday of each month at 7 p.m. ET on Zoom. All wheelchair-using parents and their partners are welcome.


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Help Hope Live
10 months ago

This is so fabulous. We are super grateful for all the support Josh has offered to our nonprofit over the years, and now we get to see a new piece of his own journey blossom with Calder!