Keegan and Corey Kistenmacher felt the way many parents do when their daughter Cassidy was born January 20, 2016.
They were excited to meet their new baby girl, who had been born at the couple’s home on South Hill after they were unable to get back to the hospital on time to deliver.
“I felt that was the big start to her journey,” Keegan said.
Cassidy was the couple’s second child, after Kaiden, who is currently 4 years old. Keegan could tell that carrying Cassidy was different; Cassidy was much smaller than Kaiden was in the womb.
When Cassidy was born at full term, she was only a little over three pounds. But other than her small size (due to intrauterine growth restriction, which prevents a baby from growing to a normal weight during pregnancy) Cassidy seemed healthy.
“We just thought, ‘All right, our baby just had a rough start,’” Keegan said.
But a bigger shock came a few months later, when the couple noticed that Cassidy’s head wasn’t growing and didn’t have soft spots. When they took her to the hospital, she was diagnosed with microcephaly.
“It’s basically a condition that affects children and it makes it so their heads don’t grow,” Keegan said. “It was something we didn’t know my daughter had when she was born because she was also really small.”
It’s basically a condition that affects children and it makes it so their heads don’t grow. It was something we didn't know my daughter had when she was born because when she was born, she was also really small.
Keegan Kristenmacher, Cassidy’s mother
The couple didn’t know very much about microcephaly.
“I had never even heard of it. It wasn’t anything I’d ever been exposed to prior to this,” Keegan said. “The first thing I did was I went home and Googled it, and there’s nothing but scary stuff — the severe side of microcephaly.”
But Keegan came to learn that anywhere from two to 12 babies out of 10,000 live births have microcephaly. Some children with the condition can have trouble talking and walking, while others don’t have those struggles, and many live normal lives.
Two to 12 babies out of 10,000 live births have microcephaly.
“We didn’t know how our daughter was going to grow up,” Keegan said. “My husband and I really had to come to terms with that — that our baby might live with us for the rest of our lives.”
As she grew, Keegan kept notes on Cassidy’s weight and size. While she had to occasionally wear a helmet, Cassidy could feed herself and move around. But as a baby, she never babbled.
“She was very quiet her whole life,” Keegan said.
But that didn’t stop Cassidy from smiling.
“She was just absolutely the happiest little girl ever,” Keegan said. “She had so much personality for being 19 months old. Everybody who saw her just loved her.”
She was just absolutely the happiest little girl ever. She had so much personality for being 19 months old. Everybody who saw her just loved her.
Keegan Kristenmacher, Cassidy’s mother
But in August, Cassidy fell sick. She had a fever, and her parents rushed her to urgent care. There, they were told she had a double ear infection. Keegan and Corey returned home to make sure Cassidy rested.
On Aug. 30, at 19 months old, Cassidy passed away in her crib, leaving the world at the same place she entered it — her home.
“She passed sometime in the middle of the night,” Keegan said. “It just really hit us blindly.”
As a daycare teacher, Keegan was able to take some time off to spend with Cassidy before her death.
“I had gone back to work one week before she passed and I’m so glad I stayed home with her and have all those memories with her,” Keegan said.
Keegan, Corey and other family members hosted a celebration of life for Cassidy after she passed, wearing yellow to raise awareness about microcephaly. Keegan said they received a lot of community support.
Exactly a month after Cassidy’s death on Sept. 30, came Microcephaly Awareness Day.
“We definitely want to spread awareness of it every year when Microcephaly Awareness Day comes around,” Keegan said.
Mostly, Keegan said she wants people to know that microcephaly isn’t a scary thing, and said she would be more than willing to talk to parents who have gone through the same as her.
“I would love it if people knew it’s not as scary as it sounds,” Keegan said. “It sounds like it’s a scary thing, but it’s not.”