CLEVELAND — Five years ago, Shirley and JR Smith felt helpless as their own daughter Dakota was born at 22 weeks.
"I didn't even know what a premature baby was until I had Dakota. And that was only 5 years ago," said Shirley Smith as we spoke with her from her home in New Jersey, where the family now lives.
It doesn't seem that long ago that JR Smith, then a guard for the Cleveland Cavaliers, announced the birth of baby Dakota. Those that followed either of the Smiths on social media knew - the baby wasn't due until late spring.
At the time of her birth on January 2nd, Dakota was one of the world's smallest newborns, considered a "micro-preemie."
The doctors, nurses and staff at Hillcrest Hospital would do all they could for Dakota, but Shirley and JR were also told to prepare for the worst.
"I felt so bad because it's like, 'here I am. Am I being selfish for asking you to fight for your life?'" said Smith.
Shirley and JR chronicled the good days and very scary days of Dakota's first few months. Even though she weighed less than a pound, and faced a mountain of health issues, baby Dakota beat the odds. After 141 days in Hillcrest Hospital's Neonatal Intensive Care Unit, she went home with her mom and dad.
The Smith's experience and gratitude drove them to establish My Kota Bear,
a nonprofit organization helping families of preemie's with much needed supplies, education and emotional support.
"What we do is we stand in the gap for NICU families, who have a need. We service everyone globally," she said.
And the need is great, especially here in Northeast Ohio, in spite of our world class health care.
"We have a higher prematurity rate and a higher infant mortality compared to the national benchmark across the United States," said Dr. Hany Aly, who is the Department Chair of Neonatology at Cleveland Children's Hospital.
Much progress has been made over the years in neonatology. "We used to have a limit of viability at 24 weeks. And then it was 23 weeks. Now we are resuscitating 22 week premature babies. These babies are having a high mortality rate and the problem, even when they survive is a considerable number of them who will have neurodevelopmental delays and long term consequences," Dr. Aly explained.
Dakota Smith turned 5 in January and Shirley says she is doing well. She does have a number of neurodevelopmental delays, but she is thriving in her therapies, loves learning, dance and swimming.
"She is blossoming and it is a blessing to see her grow," she said.
And in celebration of their 5th year, My Kota Bear will be hosting a two-day community event in Cleveland. On Saturday, March 19, 2022 at 7 p.m., a "One Night Only in Ohio" fundraiser event for approximately 80 people where some moms of premature babies will be acknowledged. These moms have been and continue to overcome challenges that parents of premature babies go through. In addition to some doctors, nurses, and staff who embrace the NICU families on a daily basis as their own will also be acknowledged.
The 2nd event, "One Day Only in Ohio", will be held on Sunday, March 20, 2022 at 2pm, which will be a discussion about "Life After Having A Preemie" Founder, Smith, will host a min-workshop, share her experience and connect with NICU moms to mentor, give support, share experiences, educate, and empower them to be the advocate that their child needs them to be in this unique world.
To date, My Kota Bear has helped more than 200 families globally. Ticket information for this weekend's events can be found HERE.
Shirley Smith still gets emotional when she thinks about those early days with Dakota and staff at Hillcrest that helped them get through those scary first few months.
"The hospital, the nurses, the doctors, they were our family and they stepped up and helped us when our real family could not be there," Shirley said.
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