Asher was born Sept 6, 2014 at term. Weighing 7lb 13 oz, he appeared healthy as can be, we were
discharged within 24 hours of birth and brought him home to his older sister.
At just over 48 hours old Asher seemed unwell so we took him into the Emergency room in the early morning hours of Sept 9, expecting to be home in a few hours as most ER visits had always been for us.
As they assessed Asher it quickly became a room full of people trying to figure out why his temperature was so cold. Asher was in cardiogenic shock and was incredibly sick. At one point we were going to wait
for morning to go to a walk in, which is a scary thought now. He was paralyzed, intubated and brought
to the PICU that night.
We were told that Asher was born with Hypoplastic Left Heart Syndrome, which somehow miraculously was missed on all 4 ultrasounds. He had only 2 developed chambers of his heart, both on the right side. He should have been taken straight to NICU after birth to be given medication to keep his heart functioning until he could have his first surgery. They were unsure how he would fare without the proper care from the beginning and if the shock had affected his other organs and his brain.
On Sept 10, he was flown to the Stollery hospital for his 1st of 3 necessary open heart surgeries in the
treatment for HLHS. These are considered Palliative as there is no cure or full repair for HLHS.
On Sept 17, at 11 days old Asher underwent the Norwood procedure, an incredibly risky procedure. He
did amazing. After another week in Edmonton, Asher was airlifted back to RUH in Saskatoon for another
4 week stay in the Pediatric ward.
When Asher was finally brought back home at about 6 weeks old, he was completely tube fed and on a lot of medications. We had learnt a lot in a short amount of time. He was unstable during the first 6 months until he was big enough to undergo the 2nd stage of the surgeries. We kept isolated in our house as best we could as a cold could have been detrimental to his health at that point.
On March 18, 2015 at 6 months old Asher went through the Glenn Procedure at the Stollery hospital. He was out of the hospital 5 days later, this time we drove him both ways! After this surgery he was a whole new kid. So much stronger and he was able to learn to drink bottles and lose the feeding tube. He caught up in his gross motor skills, and as time went on, we were fairly certain his brain was okay from
his late diagnosis.
On May 4, 2018 at 3 and a half years old Asher underwent his third open heart surgery, done by the very same surgeon as the first two at the Stollery. This procedure is called the Fontan, the final step in the 3
stages. It was a seven day stay in Edmonton and back home. He did great again. These surgeries make it
so that he still only has half a developed heart, but is able to function with that.
We have been blessed with Asher’s health up to today. He has underwent 3 open heart surgeries, 2
heart catheterizations and 3 other surgeries. He is 7 years old and in grade 2. He plays hockey with his
peers now and from the outside no one would even know what he has endured to be here today. He is a
living miracle to us. Asher has one older sister, one younger brother a new baby sister. Asher is still
monitored yearly by Cardiology, respirology, and a pediatrician. He was discharged by therapies and
ENT. The future is unknown as these surgeries have only been around for a few decades but if his heart
requires more help the next step would be a transplant. We hope that his heart continues going for years to come.
Connect with Kailey on Instagram @raising_myfour