When anticipating the arrival of a new baby, many families prioritize the health of their newborns. However, not everyone opts for genetic screening before childbirth. In Jacksonville, Florida, Justin Ackerman and Savannah Combs welcomed premature twins into the world on May 12, 2021, two months before the expected due date. Aware that one of their babies might have a genetic disorder, they chose not to undergo additional testing. Both baby girls, Mckenli and Kennadi Ackerman, were born with Down syndrome, a rare occurrence that makes them one in a million.
While the statistical likelihood of both twins having Down syndrome is exceptionally low, the parents were surprised by the news but overjoyed that both daughters were healthy and content. Born prematurely, the twins required extra time in the hospital, making their eventual homecoming with Mom and Dad even more special.
Down syndrome, also known as trisomy 21, results from the presence of an extra part or an entire third copy of chromosome 21. The experiences of individuals with Down syndrome can differ significantly. Some successfully graduate from high school, pursue higher education, and enter the workforce. Conversely, others may need more support with financial and legal matters in adulthood and may never achieve independent living. Regular check-ups and health screenings are advisable for individuals with Down syndrome across their lifespan.
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Each child is unique, but Mckenli and Kennadi truly stand out as “rare.” Dr. Pamela Trapane, the medical director of Wolfson Children’s Hospital’s Duran Genetics Center in Jacksonville, Florida, emphasized the extraordinary nature of both twins being born with Down syndrome.
The arrival of Mckenli and Kennadi was a surprise to everyone. Dr. Trapane noted, “For every 1,000 twin pregnancies, around two will have at least one baby with Down syndrome. However, the chance prior to a pregnancy that the pregnancy will be twins and that both twins will have Down syndrome is around one in 1 to 5 million.”
Responding to the unexpected news, the parents had different reactions. Ackerman, Combs’s husband, felt “very emotional” upon learning of the twins’ diagnosis, while Combs expressed her joy, stating she was “just happy they were here.”
Despite being informed of the high likelihood of one of the twins having Down syndrome before birth, the couple opted not to undergo further genetic testing (amniocentesis) to avoid the risk of miscarriage associated with the invasive procedure. Combs, a first-time mother, considered every prenatal appointment with the twins as a blessing.
In January 2022, the twins achieved “milestones like no other,” undergoing physical and occupational therapy weekly. According to Combs, they were on the verge of crawling at the time.
Both girls, described as incredibly adorable, are thriving, bringing immense joy to their parents. Combs highlighted the distinct personalities of the twins, noting that Kennadi is a “ray of sunshine” while Mckenli is “a total diva.” She humorously captioned a photo, saying, “Mk will never smile well sometimes lol.”
In an interview with News4Jax in October 2021, Combs, speaking about her five-month-old twins, emphasized the rarity of their condition, stating, “It’s very rare what they have, but they’ve been my little gems.”
Elaborating on the unique nature of their twinning, Combs explained, “They’re called mono di twins, meaning that they had their own sacs, but they shared the same placenta, meaning that they were going to be identical.” She went on to highlight the exceptional rarity of mono di twins, especially when combined with Down syndrome, saying, “Mo di twins as it is, it’s like very rare. And then you throw Down syndrome on top of it, it’s like one in 2 million.”
Mosaic Down Syndrome, characterized by an extra #21 chromosome copy, resulting in 47 chromosomes instead of the typical 46, may present with normal features or less severe characteristics of Down syndrome, according to the Children’s Hospital of Philadelphia.
As a mother, Combs emphasized the humanity of her daughters, reminding everyone that they are no different than other babies. “They have feelings. They have a beating heart. They know how to talk. They know how to do things you do. They will get there. Like I said, it may be a step behind, but they’re going to do it. I’ve learned these kids are feisty little things and happy little things,” explained the loving mother.
For Down Syndrome Awareness Month, Combs sought to convey a simple yet powerful message: children born with the condition are no less than anyone else. “They’re just like us. I’m not going to treat them any differently because they have Down syndrome,” she asserted.
Raising a child with Down syndrome, deeply loved but often treated differently by the world, poses challenges. Parents in similar situations understand that their children are just like any other, yet the negativity associated with the condition can be challenging for families to navigate.
However, Combs and her family are actively working to dispel the stigma and negativity surrounding children with Down syndrome through their TikTok channel.
Despite the overwhelming love the family receives for their babies, certain individuals on TikTok have not hesitated to express disdain for Combs’ affection for her children. On October 6, 2021, the first-time mom addressed this issue on her Facebook page, revealing that some trolls had left negative comments about her babies and shared her response to one particular critic.
“The girls went viral on TikTok, and no, I didn’t expect them to. Just was being goofy,” Combs began before disclosing that some of their TikTok audience had been quite “rude.”
“I had one tell me, ‘I wouldn’t want those babies; if mine came out like that, they would be straight up for adoption,’” the naysayer commented. Combs responded:
“I said, ‘Good thing they weren’t born to you and were born to me. God knew what he was doing by giving these babies to the right parents who would love them regardless.’”
She added:
“I will always love my babies and how blessed I am to see them grow every day!!!! We can always have another baby who is considered ‘normal,’ but my two girls are normal in my eyes and living a pretty dang good life if you ask me.”
Fortunately, the family is thriving and even weathered COVID together, as one of Combs’ posts in January 2022 revealed. We extend our best wishes to these beautiful girls and their wonderful family for a bright future!
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