United Spinal Association’s newest virtual support group, Rolling into Parenthood, meets on the second Wednesday of each month at 7:00 pm ET on Zoom. All parents who use wheelchairs and their partners are welcome.
Our facilitators are three parents who use wheelchairs, two dads and one mom, with kids of varying ages, from infant to teenager. They are excited to share their experiences and knowledge with you.
Meet our facilitators:
Erin Gildner, Sharing Knowledge
After Erin Gildner was paralyzed in a 2002 car accident, one of the first questions she asked was if she could have children. She found the answer sooner rather than later when she became pregnant with twins in 2004, just 18 months after her injury. Given that she was newly injured and pregnant for the first time, she assumed the doctors would have adequate knowledge on treating a pregnant patient with a spinal cord injury. But that wasn’t the case.
“I went into labor at 25 weeks and didn’t realize I was in labor because I didn’t know what it would feel like. I searched for resources, but there weren’t many at that time. There wasn’t the capability we have now with social media to reach out to other moms who had children after spinal cord injury. So, I was really alone,” says Erin, United Spinal’s Chapter Relations Director.
She was pregnant with twins. Although she gave birth to her son vaginally, she needed an emergency c-section to have her daughter. Due to complications, her daughter was immediately transported by helicopter to the children’s hospital. She was put on life support and passed away three days later.
“It was a traumatic birth story,” says Erin. “It’s very common for twins to be born prematurely. And having a pregnancy with a spinal cord injury and the likelihood of having UTIs and kidney infections increases that risk.”
She wants to share her knowledge and experiences to support other pregnant people with spinal cord injuries, so they don’t have to go through what she did.
Erin felt more prepared for her second pregnancy. “I knew the questions to ask and understood that doctors weren’t necessarily going to understand my disability,” she says. “So I sought out providers with experience treating people with spinal cord injuries. Also, I found a high-risk OB and was just more careful in taking care of myself and advocating for myself.”
She credits physical and occupational therapists for helping her stay strong and independent during and after her pregnancy.
“They helped me practice picking up a 10-pound ball. Also, they taught me to transfer safely and identify helpful tools. That gave me a strong basis. I don’t think that PTs and OTs are used enough during pregnancy.”
The Cool Mom
Erin’s sons, Hagen and Koen, are now 18 and 16. Although lack of accessibility has made it difficult for her to chaperone field trips or attend gatherings with other parents, Erin says she has been able to shift perspectives of what it looks like to be a parent.
“The positive impact is that I’m out there in the community. I attend events with my son, like tennis matches or band concerts. People see me out in the world, and it reframes their idea of what a parent is. It shows people that you can be a successful role model for the community and a great parent regardless of disability.”
Better yet, her son Koen and his teenage friends even described her as cool.
“I posted something on Instagram, and Koen’s friends saw it. One friend said, ‘your mom is so cool.’ And my son agreed,” says Erin with a chuckle. “As a teen, I was concerned about other people’s thoughts and didn’t want to be around my parents. So the fact that my kids think I’m cool and want to hang out with me even at 16 and 18 years old is pretty awesome.”
No matter where you are on your parenting journey, she encourages you to get involved with Rolling into Parenthood.
“This is the kind of group I was looking for when I was pregnant and when my kids were little,” she says. “There are so many great perspectives, and having that support is important. It’s a very informal, supportive and comfortable setting.”
Matt Castelluccio, Redefining Fatherhood
After United Spinal’s Director of Community Support Matt Castelluccio, and his wife, Elaine, struggled to get pregnant naturally, they pursued in vitro fertilization. Two attempts later and they were pregnant with triplets. Unfortunately, one of the embryos needed to be medically removed due to complications.
“After six months of pregnancy, my wife was placed on bed rest. At seven and a half months, one of my babies decided he had enough of being in her belly and was ready for the world. The other one didn’t want to come out. Still to this day, they are opposites,” says Matt of his 10-year-old twin boys, Dominic and Robert James, nick-named RJ.
The babies were born six weeks early and needed a feeding tube and oxygen. Once their mom and the twins stabilized, the Castelluccios were able to begin their journey as a family of four.
Matt didn’t have to worry about the physical complications of carrying a pregnancy. But he did struggle with being a father with a spinal cord injury.
“I was a wheelchair user for 10 years before I became a parent. I worked hard to be fully independent in all aspects of my life and became 100% comfortable with my disability,” says Matt. “When the kids came, I felt like I had to start over learning everything.”
Due to limited function in both arms, Matt struggled to find safe ways to hold his kids. But after researching adaptive equipment and trying various methods, he was able to secure the twins on his lap with an overhead sling. He developed similar creative ways to change diapers, pick the twins up from their crib and feed them.
“After developing these techniques, I had to convince my wife they were safe so she wouldn’t be anxiety-ridden,” he says.
Express Your Feelings
Even after physically accomplishing the everyday tasks of parenting twins, Matt struggled emotionally.
“I always had these visions of playing catch with my sons or throwing them in the pool. When I realized that I would not be able to do some of these things due to my level of disability, it brought up strong emotions,” he says. “I felt I could not share them with my wife because it would take away from her joy, or she may not understand how I was feeling. So, I internalized these struggles and quietly dealt with them.”
The Rolling into Parenthood group aims to provide parents with a place to express feelings like these. It’s a space to share the resources and support they need to embrace all ups and downs that come with parenting on wheels.
One of Matt’s biggest takeaways is the power of redefining parenthood.
“Changing a diaper or bathing does not make a person a parent,” he says. “Being present and engaged in whatever way you can and being part of the process is what makes a person a parent.”
Lesly St. Louis, Adoring Dad
Unlike his two colleagues who have been parents for over 10 years, Lesly St. Louis, United Spinal’s Director of Employment & DEI Programs, is new to the club. He and his wife, Rizza, started dating in 2006. They married in 2020 and welcomed their daughter Leslie Gabriella into the world eight months ago. He is still in the beginning stages of fatherhood and is learning to adapt to everything for the first time.
One of Lesly’s first challenges was finding a bassinet that he could independently and safely use with his daughter. Initially, he tried an approach that he saw from another wheelchair user on YouTube. “He uses towels almost like a crane, wrapping them around the baby to lift her,” says Lesly.
But that didn’t feel right to the new father. They ended up buying a new bassinet entirely, one that had an opening on the side. He also found a carrier that allows him to carry his daughter around the house on his lap as she becomes more mobile.
Adapting to New Circumstances
As his daughter grows, Lesly knows they will learn to adapt to many new circumstances together. His goal is to take his daughter outside when the weather gets warmer independently.
“The majority of the time, when I’m with the baby outside the house, I’m with my wife or my family,” says Lesly. “When the time comes, I want to be able to do that on my own. So, we’re figuring out how I can get her safely from the house to the car and wherever we’re going.”
As Lesly leans into being a first-time father, he finds joy in watching his daughter take in the world. “It’s an unexplainable feeling to see her develop so quickly, watch her react to different environments and be able to recognize different people,” he says. “Her saying Daddy was amazing because that was her first clear word apart from the baby babbling.”
As the father-daughter duo continues to grow, they have a space to receive encouragement and understanding through the Rolling into Parenthood group. Becoming a parent is difficult, and a spinal cord injury adds complications. But it is possible and oh so worth it, especially with support from a strong and loving community.
This article was written by our Social Media Manager Shannon Kelly. For more information about all United Spinal’s chapters and programs, please contact our Community Supports team. Join us by signing up for a free membership. To support our mission, donate here.
