Mylah’s Smile: Blue Cross Employee Raising Awareness of Trisomy 18
Six-year-old Mylah Perkins’ smile is big and joyful.
Doctors said it was a sight her parents would never see. They didn’t have high hopes that Mylah would even make it to birth and if she did, it was likely she’d die before she was a year old.
“Doctors said she would never smile, but her smile is what greets me every day when I get home,” said her mom, Mina Perkins, manager, Provider Operations and Innovation at Blue Cross. “I use that smile to inspire others dealing with any situation.”
When she was 19 weeks pregnant, Mina Perkins and her husband, Juwan, learned that their first child had Trisomy 18, also known as Edwards Syndrome. The chromosomal condition is the result of abnormal cell division, with affected individuals having three copies of chromosome 18 in each cell of the body instead of the usual two.
Instead of preparing them for a new baby, hospital staff put Mylah’s parents in touch with a local hospice organization and funeral homes. The family received a book of poems written by grieving parents. They were told that even if Mylah was born, they wouldn’t fix her heart condition identified in utero.
“They did not believe Mylah would be born alive and they believed that if she was born and was alive, she wouldn’t live very long,” Mina Perkins said. “We cried for at least a week.”
Mylah’s doctors’ concerns weren’t unfounded. Only five to 10 percent of children born with Edwards Syndrome live past their first year. Mylah did end up having heart surgery as a baby at a different hospital and continues to have regular appointments with therapists and specialists to work on the severe developmental impairments she faces as a child with Trisomy 18.
The early surgery was in part a result of the hospice program the family was connected with. Specialists prepared the family for both scenarios they could encounter – birth or death. They encouraged them to celebrate life for as long as they could, to go ahead and throw a baby shower for their first child. Hospice workers helped the couple develop a birth plan and helped them access the heart-repair surgery Mylah needed after she was born.
That encouragement and support to celebrate Mylah’s life has been a thread throughout her six years. The “silly” and “feisty” girl is doted on by her proud parents. Mina Perkins said they go at Mylah’s pace, celebrating her accomplishments as they happen. They allow her to write her own story – whatever that may be. Her heart is strong, and the family is thinking about enrolling her in school in January.
“To me, she’s the strongest person I’ve ever known,” Mina Perkins said.
The joy Mylah brings to her family is something Perkins doesn’t want others to miss out on. When she was pregnant, she connected with a mom of a son with Trisomy 18 online, who inspired her to press on. By sharing her story, Mina Perkins hopes she might inspire families facing a Trisomy 18 diagnosis to consider the joy that raising a special-needs child can bring.
“I need to do that for someone else,” she said. “You never know who is out there searching for hope.”
Mina Perkins advises families to do their own research to determine what’s best for them. She recommends talking to parents of children with Trisomy 18 to get an accurate picture of the realities of raising a child with Trisomy 18.
“It’s very hard and at times can be challenging – mentally, physically and emotionally, but I would not change any decision I’ve made,” she said.
Mina Perkins has been sharing her story with fellow Blue Cross employees through the company’s internal Bright Blue Employee Resource Network (ERN), which aims to educate the Blue Cross workforce on what it means to be differently abled, and to create a sense of belonging and inclusion for all individuals.
“As a member of the Bright Blue ERN, I am always looking for ways to promote diversity and inclusion,” she wrote in a recent internal blog post. “I think when we interact with others that have different abilities or look different, we will teach our society to appreciate these differences. I’ve learned from Mylah that children with unique needs can teach this world about compassion, hope and unconditional love and a world with those things is a better world for all of us.”
If you see Mylah out and about or if you see another child who is differently abled, Mina Perkins advises that you don’t stare and don’t ask what’s “wrong”. Just smile and say hello. You might just be rewarded with the biggest, sweetest smile in return.
For more information about Trisomy 18, Mina Perkins recommends SOFT (Support Organization for Trisomy 18, 13 and Related Disorders) as an excellent resource. Visit their website here.
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Photos courtesy of Mina Perkins