McKenzie Costain, age 8, has developed a special relationship with Nurse Practitioner Carolyn Davis in Akron Children’s Bowel Management Clinic. McKenzie has been a patient in the clinic since shortly after her birth.
When Lindsey Costain was pregnant with her daughter McKenzie in 2016, everything seemed normal –until a failed stress test at 7½ months led to a referral to Akron Children’s Maternal Fetal Medicine department at Aultman Hospital.
“I was scared because they thought the baby only had one kidney,” said Lindsey. Though unsettling, doctors reassured her that many people live full, healthy lives with one kidney.
Surgery at 2 days old
After her birth on Nov. 8 at Aultman Hospital, nurses discovered a critical condition: McKenzie was born without an anus. She was immediately transferred to Akron Children’s NICU for further testing which revealed additional concerns – a tethered spinal cord and kidney reflux, where urine flows backward, increasing the risk of infections and kidney damage.
At just 2 days old, McKenzie underwent her first lifesaving surgery to correct the rectal and anal defects.
McKenzie had her first surgery at 2 days old to correct her anorectal malformation.
“The surgeons did what they call a ‘pull through,’” said Lindsey. “Her anatomy was there; it just wasn’t where it should be. As a result, McKenzie had a colostomy bag until she was 8 months old.”
The “pull-through” procedure, or Posterior Sagittal Anorectoplasty (PSARP), repositions the rectum and creates a new anus within the anal sphincter.
Lindsey meets a lifesaver
When McKenzie was 3 months old, Lindsey found a crucial partner in her daughter’s care: Carolyn Davis, a colorectal nurse practitioner at Akron Children’s Bowel Management Clinic.
“I am so grateful that I met Carolyn when I did. I honestly don’t know where we’d be without her,” said Lindsey. “One of the things Carolyn taught me as a new mom was that you know your child best and to advocate for your child. I will never ever forget that, and I try to pass that on to others.”
McKenzie’s condition will require lifelong care, but that hasn’t stopped her from participating in things she loves like dance, softball and basketball.
“McKenzie has a complex medical history with multiple surgical subspecialties involved, and having a program dedicated to her colorectal needs is vital,” said Carolyn. “What’s equally important is developing relationships with families. Diagnoses like these – especially at birth – can be frightening. Our connection with families helps ease that stress, so they can focus on being parents.”
Now 8 years old, McKenzie has undergone 9 surgeries, with another scheduled this month. Her next surgery will assess her colon’s motility and determine if she qualifies for the Malone procedure, which would create a small channel from her abdomen to her colon, allowing enemas to be given through her belly button instead of rectally.
“McKenzie can’t clear her bowels fully and has severe constipation, so we give her enemas four or more times a week,” said Lindsey. “If she’s able to have the Malone procedure, she’ll be able to start giving herself enemas.”
Daily challenges don’t stop McKenzie
McKenzie sees Carolyn every 3 months for care adjustments. While she has no physical restrictions, managing her condition requires constant attention – hydration, dietary awareness and strict bowel routines. Despite the challenges, she is thriving.
Despite everything she has been through, McKenzie’s mom says she is happy and always smiling.
“Looking at McKenzie, you see a beautiful, smart, spunky, athletic 8-year-old. What you don’t see is the daily struggle she faces with things other kids never have to think about,” said Carolyn. “She’s had to mature faster than most, but that’s also made her very in tune with her body and what it needs to thrive.”
McKenzie’s condition will require lifelong care, but Lindsey says you’d never know it by looking at her.
“She’s happy all the time, she’s always smiling,” said Lindsey. “She’s a tough little girl. She plays softball and basketball, and she’s in Girl Scouts. We let her do the things she wants to do.”
For Lindsey, Carolyn has been more than a provider – she’s been a lifeline.
“I was a disaster when we first learned of all of McKenzie’s issues,” said Lindsey. “Carolyn has been such a support through it all. When McKenzie was hospitalized, Carolyn came in on her days off to check on her. I consider her more of a friend than a provider.
“I just want the best for my daughter,” Lindsey added. “And I feel very fortunate to have a team I trust so close to home.”
