Expectant mother Lea, who has type 1 diabetes, was admitted to OSF Saint Mary Medical Center once a month for 8 months during her pregnancy due to Diabetic Ketoacidosis (DKA) and was starting to go into kidney failure. But that was only the tip of the iceberg! Clay and Lea were also battling for their unborn daughter Kah’Lana who at 15 weeks of gestation was diagnosed with holoprosencephaly (HPE) which meant her brain was not sufficiently dividing into left and right halves.

A diagnosis of HPE can range from being most severe where the brain is not divided at all which can result in death within 12 hours of birth or lead to severe facial deformities among a plethora of other complications. Waves of grief passed over the couple as this news reminded them of Lea’s former miscarriage and former still birth. The thought of losing child number three was more than their hearts could bear. All options carried a heavy weight, but they held onto God as they were processing what this could mean for their baby’s future.

While hospitalized at St. Mary’s for yet another episode of DKA, Lea began to go into labor eight weeks early. Uncertainty about the health of their baby abounded. The care team was ready and equipped with a ventilator and all the other extras to care for Kah’Lana. The newborn was immediately life flighted to OSF Children’s Hospital in Peoria. It was grueling for the couple to have Kah’Lana whisked away while Lea had to be tended to for two more days at OSF St. Marys before being discharged after Kah’Lana’s birth on March 05, 2024.

The couple drove to Peoria as Kah’Lana was clinging to life. Oxygen tubes, feeding tubes and all other sorts of tubes didn’t keep Clay and Lea from holding little Kah’Lana upon their arrival still not knowing if she would survive another day. They anxiously awaited the brain MRI results. For Kah’Lana, the front of her brain did not grow into a left and right hemisphere and there were issues with her pituitary gland growth. Thankfully Kah’Lana’s case was not the most severe form of HPE.

In the several weeks spent at OSF Children’s Hospital NICU, Lea said she saw Kah’Lana beating every obstacle! Lea and her husband clung to hope of being able to take Kah’Lana home and they were infused with great strength seeing Kah’Lana’s fighting spirit. 

When asked about the care Kah’Lana as well as Lea and her husband were receiving, Lea stated she and her family felt so surrounded by the love of caregivers. One meaningful moment was when Lea heard a commotion in the hallway. She went out into the hall to be greeted with a Unicorn Parade and was handed a candy sucker which would be Kah’Lana’s first. Lea reflects on many firsts for Kah’Lana such as her first Easter celebrated at Children’s Hospital, the first tube being removed, and so on.

Lea and her family celebrated another first. Lea’s first mother’s day was spent at home with Kah’Lana safely nestled in her arms! Kah’Lana went home May 7^th and no longer needed extra oxygen nor other helps besides a G-tube for feeding that is not needed consistently. There will still be a long journey ahead, but Clay and Lea say the days are filled with new hope. They watch Kah’Lana for seizures and blood sugar levels and will work through various developmental delays. Kah’Lana has surprised EVERYONE from doctors to nurses to other family members as she continues to thrive and is doing amazing.