When Frances Waterman-O’Connell was pregnant with her son, she and her husband David discovered after an ultrasound at eight weeks which showed a marker indicating something that was not presenting as normal development. As weeks went by, Frances had regular check-ups and the routine maternal serum screening that also indicated their baby would most likely have special challenges. Frances and David were ready for whatever challenge their baby was presenting and they were still excited to meet their son. In March of 2013, Evander made his way into the world and Frances and David were thrilled to finally meet him. After his birth, Evander spent 12 days in the IWK’s Neonatal Intensive Care Unit where they ran many tests as Evander was showing some abnormalities while in the NICU. They were discharged to go home as a family, but this was not the end of their journey at the IWK as they continue to be followed by a multidisciplinary team at the IWK.
Evander does not have a complete diagnosis, but they know he has a neurological disorder with characteristics of Pitt Hopkins Syndrome. This comes with several complexities throughout his development such as hearing loss, cognitive delays, vision impairment and mobility challenges.
“We always felt we were receiving the best care from IWK, not rushed and all our questions were answered. When we would present what we have observed of our son to be considered, we always felt heard,” shares Frances.
Evander, now eight, responds very well when visiting the IWK and he especially loves the sensory items in various care areas and the big bubble fish towers. Evander is often accompanied by Nevaeh to the IWK, and he absolutely loves his big sister.
“It’s the worst place you want to go, but the best place you want to be because when your child is very sick or has challenges, you go to the hospital; but to be at the IWK, you know they are getting the best help they can receive,” says David.
Evander continues to visit the IWK often and their family is always amazed and thankful for the support they receive.
