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Grace's journey starts at our 20 week anatomy scan. That is where we saw a glimpse of how special Grace is. In that ultrasound, we were told that Grace had scoliosis, club feet and a recessed chin/short jaw bone. We were encouraged to go through with an amniocentesis, so we did. The results of that test came back perfect - no chromosome abnormalities. Fast forward to January 27th when Grace was born via emergency c-section, we discovered Grace had more special features than just the 3 that were found in our ultrasound.

Grace was born with scoliosis, spinal fusion, clubbed feet, arthrogryposis, micrognathia, cleft palate, ptosis, low set ears and severe muscle weakness. We spent the first 16 days of graces life in the Regina general hospital between the NICU and Pediatric units while we waited for the next round of genetic testing results to come in which involves my husband and I each giving a blood sample to compare to Grace’s. We were able to take Grace home after 16 days in the hospital with a feeding pump as she wasn’t able to eat on her own. After settling into our new routine at home, we got the call with Grace’s genetic test results. She was given a diagnosis of Klippel Feil type 4. She is one of 11 documented in the world and the only person in Canada. It was determined that my husband and I both carry this specific gene and all of our children had a 25 % of being born with this.

As our days at home continued, Grace started to decline. We noticed her breathing wasn’t normal and she wasn’t tolerating her feeds. After only 11 days at home, we took her back to Regina General Hospital emergency department. The next day, February 24th, 2022, we were flown to the Jim Pattison Childrens Hospital in Saskatoon and Grace has remained there ever since.

Since arriving at JPCH, Grace has bounced back and forth from the Peds unit to the PICU and now remains in the PICU permanently. She has received multiple surgeries including a Jaw Distraction, g tube, PGJ tube , tracheotomy, countless PICC lines, and every test under the sun. She has also experienced countless set backs, infections and complications. She has been seen by every speciality department and has been published twice.

Grace currently requires ventilation for 18 hours a day as her scoliosis is so severe that her lungs aren’t able to work as they should. We are so thankful for Grace’s medical team and her amazing primary doctor , Dr. Tanya Holt, who has done extensive research and is always trying new things to help Grace. If it wasn’t for this amazing medical team, Grace wouldn’t be here today. We don’t know how long we will have Grace with us, but we are determined to make the most out of the time we do have.

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