Baby Aurora was born last April, six weeks early! This was a total surprise although at their 22 week ultrasound Aurora’s parents, Hayley and Casey were told she had a life threatening heart condition – an Interrupted Aortic Arch Type B. This type of heart condition can also be associated with an underlying genetic condition. Genetic testing right after birth showed Aurora has 22q11 Deletion Syndrome which has a possible 180 different characteristics – one of them being her heart condition. 22q11 affects one in 2000 births, making it the second most common genetic condition after Down Syndrome. It can affect the heart, GI system, immune system, kidneys, thyroid and endocrine system, behaviour and cause developmental delays.
Aurora visits or has been seen by nearly every clinic at the ACH including: Cardiology, Immunology, Neonate follow-up clinic, Audiology, Dermatology, Hematology,home oxygen clinic and ENT. She has spent 99 days in hospital including living in the NICU for 69 days. She has had two air transfers, six road transfers and one open heart surgery. She’s also had 140 days of oxygen support. Aurora is happily at home now, but last month alone she had nine medical appointments. One of Aurora’s currentchallenges is that she’s immune-suppressed so it’s very easy for her to pick up bugs or infections. Her parents are huge believers in the flu shot! At nine months, she’s still not sitting up unassisted – but very close – and requires physio and occupational therapy to build her strength and motor skills, as well as speech support. She will most likely require future heart surgeries as well.
Having spent time in other hospitals, Aurora’s mom, Hayley describes the Edwards Family NICU as a 5-star resort! But it’s more than the private rooms and the beautiful building that makes her feel that way. She describes ACH as “our place,” where the people are incredible and like family. In the rare occasions when she couldn’t be at Aurora’s side, she was always confident she was safe and loved.
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