When Kate McLeod was 34 weeks pregnant, she and her husband received a diagnosis that left them reeling.
On an ultrasound, doctors noticed signs of achondroplasia, the most-common form of dwarfism, in their unborn daughter, Nora. But it wasn’t just the diagnosis that was shocking; it was the way the medical professionals delivered the news, making it seem like “the end of the world.” McLeod, 31, took to TikTok to share her daughter’s story and advocate for more-inclusive language among medical professionals.
McLeod told Newsweek about her journey so far, and what she wishes people understood about dwarfism in the wider community.
McLeod’s TikTok video shared her journey and the powerful realization that her fears were unfounded. The video caption read: “When doctors presented me with my daughter’s diagnosis of dwarfism, they made it seem like the end of the world. If only they knew, my girl does not let her size stop her from anything …
“I let the doctors scare me so much after this diagnosis. I truly believed Nora would not have a great life. I was so wrong. Medical professionals need more training on dwarfism and how to present the diagnosis to parents.”
A Diagnosis Presented With Pity
The signs of dwarfism—including her long bones measuring significantly behind, a larger head size, and trident-shaped hands—were noted during a third-trimester ultrasound. But the conversation that followed is what remains with McLeod to this day.
“The thing that will stick with me most from the presentation of her diagnosis … was the number of times that the maternal fetal medicine doctor apologized to me,” McLeod said.
The doctor briefly explained achondroplasia before asking if McLeod would like to terminate the pregnancy, saying that “many parents cannot handle the medical responsibility that comes with this diagnosis.”
McLeod was told to go to Boston Children’s Hospital for further testing and was given information for a genetic counselor. She was then led out to a side door and told she could stay to “gather herself.”
For the rest of her pregnancy, the support from medical professionals was lacking. “I found that I was often met with pity, and medical professionals tried to tiptoe around my feelings,” McLeod said. “I was never told about all of the great things that my child would be able to accomplish, even with a diagnosis of dwarfism.”
Changing the Narrative
This experience has fueled McLeod’s mission to change how a dwarfism diagnosis is presented to parents. She wants medical professionals to understand that achondroplasia is not a quality-of-life-ending diagnosis.
While there are potential complications such as “sleep apnea, spinal stenosis and bowed legs,” McLeod said that, with the correct medical team, a person with achondroplasia can receive medical care for these possible complications.
Instead of pity and apologies, McLeod said she wants doctors to provide “facts and evidence about what people with achondroplasia are capable of in life.” She added that, if the doctor had congratulated her on her baby, instead of sharing the diagnosis without such fear and upset in their voices, she would have left the doctor’s office with “information and gratitude.”
Today, 3-year-old Nora is a thriving little girl. “Nora is doing excellent,” McLeod said. “She is inquisitive, funny, brave, adventurous and loving. She finds joy from swimming, painting and spending time outside. She is your average 3-year-old in so many ways.”
The family has also found a supportive network within the dwarfism community, and McLeod said she is grateful for the support they receive.
Despite facing some negative comments online, McLeod remains committed to her mission of spreading awareness and education.
“I believe that my effort to spread education and awareness of dwarfism is important, despite the negative comments,” she said.
McLeod also offered a helpful tip for the wider public referring to people with dwarfism: “The term ‘midget’ is an offensive and derogatory word and should not be used … When referring to someone with dwarfism, you can use the term ‘little person,’” she said. “Or, even better—just use their name.”
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