“Dearest Madalyn, please know that our greatest blessing was loving you.”
Madalyn Elizabeth Skavlebo was born on Friday July 18th, 2014 at 9:39am to parents Jason and Sarah Skavlebo at the Trail Regional Hospital. She weighed 7.2 lbs and was 20 inches long. Madalyn was born with unexpected complications; eventually we had the diagnosis of PHACES syndrome. The major contributor to this diagnosis was that she was born without a sternum (her heart was flush to the outer skin and protected only by a thin membrane). She was given the nickname of “Warrior Princess”. She came out fighting and continued to fight with every inch of her being for her entire life.
Maddy was enroute to BC Children’s Hospital in Vancouver within the first few hours of her life. Doctors at BCCH had never seen a diagnosis like Madalyn’s. She was the 91st in the world to survive this birth defect. Her first two weeks of her life were spent in the PICU with an eventual transfer to the pediatric ward for further observation. After 5 days on the ward we were going home to rejoin daddy and for her to meet her two older brothers for the first time. We were blessed in having her to love for another 4.5 months.
During her short time with us Maddy met many wonderful people, formed special bonds with family and friends. One important lesson we learned from her was how precious life was. How important it was to slow down and live each day with love and a smile. Her smile was infectious and she shared it with all who interacted with her. She experienced things that not many infants ever experience. A total of six flights with Pacific Coastal for consults with her surgical teams in Vancouver. She also had to endure plastic surgery to start the long process of tissue expansion which was the beginning step to an eventual sternum by late spring.
Madalyn started getting sick at Christmas and she just couldn’t conquer it. On Sunday December 28th with her doctors, nurses and support staff of the KBRH by her side she earned her angel wings. Maddy was deeply loved by her mommy and daddy, big brothers Jaxson and Sawyer, her Nana and Papa, her Grandma and Grandpa, and Great Grandmas, Aunts and Uncles and Great Aunts and Uncles, Cousins and many others.
We will forever be in debt with the amazing hospital staff at KBRH; Dr. Knox, Dr. Loukras, and Dr. Reid and the wonderful nursing staff on maternity and pediatrics. We would never have had Maddy for as long as we did without the caring and dedicated staff at BC Children’s Hospital; the staff in the PICU, and her two surgeons Dr. Ghandi and Dr. Arneja. We cannot thank The Ronald McDonald House and Hope Air enough for their vital part in assisting Maddy with both accommodation and flights to get her to Vancouver for her surgical appointments. Ronald McDonald House became our sanctuary away from home. We will forever be so grateful for the love and support from Kalesnikoff Lumber, Interior Health Employees and those that generously donated to the gofundme account for Madalyn; Kinnaird Elementary for their love and support as well as the Rotary Club.
An open house will held on Sunday January 11th at the Fireside Inn in Castlegar between the hours of 1pm-5pm to celebrate our “Warrior Princess”. For those that would like to join the celebration we welcome your presence. In Lieu of flowers please donate to BCCH or Ronald McDonald House.