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Newborn Screening Ontario
Screening Results

Adeline's Story

Written by Sandra Mahoney, Adeline's mother

Adeline was very fortunate to be one of the only 50% of cases of critical congenital heart diseases that was diagnosed while I was pregnant. Being diagnosed early gave me time to digest the information, better understand her condition, and ask her skilled doctors questions. During her first eight months of life while we awaited her open heart surgery I had time to speak to other Heart Moms and hear their stories. Stories of newborn babies going home from the hospital with congenital heart disease with unsuspecting parents. Stories of babies being rushed back into the Emergency Room of CHEO in distress and then into emergency surgeries, with parents having no idea what is going on. Stories like Jimmy Kimmel's where parents are thrilled with a healthy newborn baby and the next thing they know their baby needs life saving treatments and surgery.

Critical congenital heart disease screening is so important because it will help turn these stories into a thing of the past and a bad memory. It is well known that mistakes are much more likely to happen when people are rushing at all, much less to save a life. Critical Congenital Heart Disease screening is so important because it will allow parents and medical staff to have time to plan how to save these babies lives.

As our Adeline recovered from open heart surgery I looked for supporters because her surgery was such a difficult and scary time for our family. I found the Canadian Congenital Heart Alliance or CCHA, the only national charity that supports patients with congenital heart disease and their families. Please view the website at www.cchaforlife.org.  I am now a Director. As a Heart Mom and a Board member of CCHA I am thrilled and relieved that Complex CHD screening is coming to our Province, and I implore other provinces to follow suit.