My Daughter

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My Daughter Zoey was born in November of 2015. When she was born it was noticed she had an unusual and large mark on the top of her head. It ran down the centre and looked almost as if it were a blister that had popped. Summerside is a very small community and the team of nurses and docotrs were very concerned so they sent photos of Zoey's head to the nearest childrens hospital, IWK in Halifax NS. Within a few hours IWK suggested she be transfered as soon as possible by air. At this moment our hearts sank as we wondered what was going on with our poor baby, our first child. None could give us any answers or any hope as to wheither or not she was going to be okay. Zoey was picked up at midnight the day she was born and me and my partner rested for a few hours after a very long labour, and drove over very early the next morning so that we could be a little clearer and ready to approach the long day ahead. We spent 6 days in hospital at the IWK, Zoey had every test possible done: Bloodwork, MRI, heart echo, brain ultrasound, spinal tap, eye exam, ear exam... the genetics team determined even before most of these tests and before seeing her that it was Adams Oliver Syndrome. Upon meeting Zoey, they seemed quite excited as the lead had been studying AOS (as well as other rare genetic conditions) for over 10 years and had yet to see a case in reality. Measuring her tiny toes and fingers, we also mentioned that my partner has tiny toes which I have always made fun of him for! Not only this, but he was born with a mark on his head as well - but 32 years ago and the use of forcepts upon delivery lead everyone to believe it was just a war wound from the assisted delivery. He is a smart, and otherwise healthy man with no further known issues. This was very relieveing to everyone and he was diagnosed as well. After all of the testing, Zoey was seen as a healthy baby with a few minor details such as a small muscular hole between two ventricals taht will be further monitored at 2/3 years of age, and abnormal vascular tissue in the retnia that is being monitored every 3-4 months to make sure they do not grow and cause retnia detachment and vision loss. At age 4 months Zoey had a plastic surgery done to remove scar tissue on the top of her head and bring the hairline together to minimize the bald spot. She did very well and looks great. She eats well, and is already nearly crawling at 6 months. Being followed by a GP and pediatriton here on the island. Me, Zoey, and my partner are part of a research group in Vancouver, BC gene-mapping for AOS. Hoping we can find more answers in the future as to why/how/what about this rare disease....