Baby’s diagnosis inspires cause

Published April 18, 2018
By Audrey Jensen
21st Space Wing Public Affairs

PETERSON AIR FORCE BASE, Colo. -- Life went as expected for Kortni Kulikowski during all nine months of her pregnancy, and when her daughter, Kambri, was born in 2017, she was a healthy 9-pound, 21-inch baby.

Everything seemed fine until she and her husband saw their daughter for the first time.

“She came out blue,” Kortni said. “She wasn’t making noise. Her arms just fell back and she didn’t move — it was terrifying because the doctors told me it wasn’t normal. She wasn’t breathing and they couldn’t figure out what was going on. She wouldn’t eat and they ended up putting a nasogastric intubation tube in on day two, up through the nose and down through the stomach.”

After Kambri underwent several tests in the hospital, Kortni and her husband Capt. Jeremy Kulikowski, Air Force Life Cycle Management Center cyber mobile command and control systems officer, learned their daughter was diagnosed with duplication syndrome, a disorder that affects swallowing, the heart, and speech and motor skills development.

When Kambri tried to drink anything, the liquid went straight into her lungs instead of the esophagus.

“She ended up in Memorial Hospital [in Colorado Springs] for three weeks,” Kortni said.

It was only safe for Kambri to go home with her family if a gastrostomy tube was surgically inserted into her stomach.

“When they were going to do surgery, I was terrified,” Kortni said. “After surgery it was hard to see her and her little belly all swollen. She had this G-tube and stitches all sewn in, it was heartbreaking.”

“Even though a G-tube is a very low-risk surgery, and the surgeon who placed it does them almost every day, it was still traumatizing,” Jeremy said.

While Kambri was in surgery, the staff comforted the Kulikowski family.
“The hospital team was amazing,” Jeremy said. “They brought us a stuffed animal that had a little G-tube in it for Kambri’s older brother, Tristan.”

“He couldn’t meet her while she was in hospital,” Kortni said. “The stuffed animal was really comforting for us as well. It’s just so hard when there’s something wrong with your child and you can’t do anything about it.”

Grateful for the help and support they received from the hospital staff, Kortni and Jeremy wanted to give back to the hospital and its patients. After Kambri was released and they continued to take her to appointments, Kortni and Jeremy teamed up to design and create 3-D printed medical devices, like G-tubes, to sew into stuffed animals.

They delivered about 60 animals, some with medical devices and some without, to Memorial Hospital for its patients in February, when Kambri turned 1 year old.

“We were just really excited to donate the stuffed animals,” Kortni said. “What got me through the whole situation was trying to make a difference and help somebody else. It sucks when your family has to go through hard times, so having a little bit of hope and comfort goes a long way.”

In addition to G-tubes, Jeremy also designed and printed tracheostomy tubes and chemotherapy ports for the animals. Kortni also sews and donates button pads for real G-tubes, which help keep the area on the stomach unaffected.

Kortni has received positive feedback on the stuffed animals, so the parent-team is currently looking to 3-D print a toy-pump for the stuffed animals with G-tubes, as well as toy oxygen tubes.

Inspired by the stuffed animal given to Kambri’s older brother, Kortni and Jeremy pursued their idea so their daughter and other children with medical conditions wouldn’t feel alone.

“The stuffed animals can go through surgery with you,” Kortni said. “Many kids are having constant surgeries. We’re hoping we never hit that point, but it is a possibility.

“To have that little comfort animal, like you, going through the same thing. It just helps parents if their child has something that’s comforting them — because mom and dad can’t hold their hand in surgery.”

Though it’s been a year since he received his stuffed animal dog, Kambri’s brother, Tristan, keeps his cuddly friend close.

“He still sleeps with it,” Jeremy said. “They have such a strong connection. He sees it as a proxy for her, and it’s just a way to provide some symbolism and emotional comfort.”

Though most of Kambri’s first year has been filled with medical appointments in Colorado Springs and Denver, her parents say their family is lucky.

“She’s defying the odds of her condition so far — I’m grateful for that,” said Kortni. “A year ago, I never would’ve thought she’d be eating the same foods we’re eating, I never thought she’d be crawling.

“I was terrified. I think any parent who has a child that has some sort of disorder, illness or medical anomaly, anything, it’s scary and it’s hard, and it’s very isolating.”

It’s been nine months since Kambri has had to use her G-tube, Kortni said, and April 4 marks the day her parents were allowed to remove the device from Kambri’s stomach.

“We never thought it would be this fast,” Kortni said. “Many kids have to have it forever or for many years. She’s doing well.”

When wingmen step up

When it didn’t seem like their situation could have worse timing, Jeremy received a phone call from his unit while Kambri was still in the hospital.

“I got tasked to deploy two days after she was born,” Jeremy said.

“She was born Feb. 20 and they tasked him on Feb. 22,” Kortni said. “He was supposed to leave April 1. That was my breaking point. I was already having a hard time and that was the end of it.”

After going through a few weeks of emotional stress and trauma, Jeremy received relieving news two hours after Kambri got out of her G-tube surgery.

“Someone voluntarily took my deployment and my place so I could stay,” he said. “He took that burden upon himself. We were just at the start of her journey.”

Resources offered through the Air Force, including strong leadership, has helped Jeremy and his family through their trials, he said.

“Having a good unit and leadership that have been willing to work with me, to let me go take care of my family, has been a great support,” Jeremy said. “I couldn’t have done that without their involvement.”

Using resources offered through the Exceptional Family Member Program has also been helpful, Kortni said.

As they prepare to move to New Jersey this summer, Jeremy and Kortni said they will continue to make the stuffed animals.

“We’re hopeful to make the stuffed animals good and touch people because these things are hard,” Kortni said. “We just want to make it all better. We’ve been through a lot but so many people have been through more, so I try to count our blessings, because we’ve been given a lot. I just feel like we need to give back.”