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Parleen was born on November 10, 2016 at 30 weeks and 3 days gestation, 2.5 months early. During our last month pregnancy, we were told the devastating news that our baby would be born with CHARGE Syndrome. CHARGE syndrome is a rare syndrome caused by a genetic disorder. Children diagnosed with CHARGE can often have heart defects, atresia of the nasal choanae, retardation of growth, and/or development, genital, urinary, ear abnormalities, and deafness.
Parleen weighed 1330 grams and has been growing slowly ever since. Our baby girl has overcome 3 major surgeries. The first one was on her esophagus as it wasn’t connected upon development. Her second was nose surgery. Her nose had membrane and tissue blocking the back of her nostrils which prevented her from breathing directly through her nose. Her third surgery was heart surgery as she had a narrowing in her coarctation which caused poor blood flow. This most recent surgery was the scariest moment for us. Our little princess pulled through with strength and has surprised us all with how well she has recovered.
We thought that was it for Parleen’s journey of ups and downs with surgeries until we recently found out she requires surgery on her airway as she has severe tracheomalacia. This surgery will need to be performed in Boston as it hasn’t happened anywhere in Canada as of yet. We are extremely nervous and scared for Parleen to travel as this is a very complex and unique case. We are praying things get better sooner rather than later but also know this will be a very long road ahead of us. We are really unsure how long recovery will be but it will likely be months in a different country without our family by our side.
Baby Parleen will be air ambulanced to Boston and only one of us can accompany her on the plane. Our finances have been significantly strained by needing to take so much time away from work, that affording a plane ticket to and from Boston for the second parent is a challenge. However, Parleen needs both her mom and dad by her side and we need the support of each other.