Three years ago, Katie Bladergroen was nearly halfway through her first pregnancy when she and her husband, Kyle, learned that the baby she was carrying had spina bifida. Since then, the Bladergroens have turned a life-changing event into both a more personal understanding of childhood disabilities and inclusion, as well as an online business for Katie.
“Inclusion has always been important to me throughout my career of working with children,” she said. “Now, as a mother to a child with a disability, (inclusion) has taken on a whole new meaning.”
July is Disability Pride Month , which marks the American Disability Act’s anniversary and ― in a nod to children with disabilities ― Bladergroen recently designed a line of whimsical children’s textiles that feature nine animals and 15 medically and disability inclusive elements.
Her "Wild About Inclusion" design includes elements such as animals with a (gastrostomy) G-tube, a nasal cannula for oxygen therapy, a wheelchair, and an (nasogastric) NG tube.
Bladergroen hopes her paper goods and textile designs allow "children who are supported with these medical interventions to see themselves in the characters as well.”
The Bladergroens moved to Savannah in 2016 when Katie accepted a position as a child life specialist at the Dwaine & Cynthia Willett Children’s Hospital . Ironically, a child life specialist is a pediatric health care professional who works with children and families in hospitals to help them cope with the challenges of hospitalization, illness and disabilities.
SIDEBAR: What is spina bifida? What is involved in fetal surgery? Here are some answers
Inclusive Design
In 2021, the Bladergroens were thrilled when they found out they were expecting a baby. And like many moms-to-be, Katie underwent a battery of routine tests on her unborn baby. All of the tests were in the normal range, except one that came back with a higher-than-normal score.
“We were told there was about a 10 percent chance (the baby) would have spina bifida after receiving an elevated result on the alpha fetal protein serum screening,” she recalled. “But we had to wait two weeks for the in-depth anatomy ultrasound.”
Waiting for the more in-depth test was agonizing for the young couple who prayed non-stop during the interim. Then, while undergoing the ultrasound on June 1, 2021, Bladergroen could see the baby’s spine scan and knew immediately that it was spina bifida . (She has an undergraduate degree in child development and psychology, and a master’s in human development and family science with an emphasis on child life.)
On that day in 2021, Bladergoen’s appointment lasted four hours. By the end of the day, Katie had an upcoming appointment with The Children’s Hospital of Philadelphia (CHOP), which her high-risk obstetrician had recommended for fetal surgery.
During this stressful time, Bladergroen said she and her husband grieved and processed the shock of the diagnosis.
“We knew our daughter would be amazing, but our hearts ached for the challenges we knew she would face in her life,” Katie recalled. “We were desperate to help her in any way we could. Ultimately, we leaned into our faith which carried us through.”
One blessing came when Katie found out that a fellow member of Compassion Christian Church had “walked this same journey with her daughter. She was the person who helped me the most with getting connected to CHOP and is still a tremendous help to me in many ways ever since that day,” she added.
Within two weeks, the Bladergroens were at CHOP for screening, consultation, and thorough imaging. Once they found out that mother and baby qualified for fetal surgery, the Bladergroens moved to Philadelphia for the procedure, which would involve early closure of the baby’s spina bifida. The couple knew the surgery would not be a cure but felt like they were doing the best thing possible for their baby.
Fetal surgery was June 30, 2021, followed by three months of strict bed rest, and a caesarian section. The Bladergroen’s daughter, Hadley Grace, was born in the special delivery unit at CHOP in September 2021. They returned to Savannah after Hadley spent three weeks in CHOP’s neonatal intensive care unit.
Today Hadley is pretty much a typical almost 3-year-old except she uses a posterior walker to move around. And now that her daughter is older, Bladergroen has returned to her creative hobby that has turned into a business.
“I started with calligraphy as a stress-relief outlet in graduate school in 2015,” she explained. “With time and practice, I was quickly doing projects for friends and family. After my own wedding, I started a calligraphy business creating custom wedding invitations and day-of details for brides in the Lowcountry.”
Katie Blade Design offers surface pattern designs and paper goods, like custom stationery, enclosure cards, among other items.
“The design business reflects my passion for children and the incorporation of inclusion wherever possible,” she said, adding that she has befriended many parents whose children also have a disability, whether "visible" or "invisible,” and face challenges of their own.
“The research is clear that ALL children are better when inclusion is intentionally incorporated into one's environment,” she pointed out. “I cannot adequately communicate the emotions felt when seeing my child play on an inclusive playground. On the contrary, it is also hard to explain what it feels like seeing my child struggle to play in a space that environmentally excludes many with disabilities, or when another child is unkind because of differences.
“I believe that when we teach children about differences and similarities from a young age, the world becomes a better place. When we model and teach kindness towards others, we take steps towards a brighter future for all.”
Hadley is now 2½ and will be a big sister to a baby girl later this summer.
For more information about Katie Bladergroen’s designs, visit katiebladedesign.com .
This article originally appeared on Savannah Morning News: Disability Pride Month: Savannah mother's daughter, work with children inspires inclusive designs
Most Popular
Comments / 0