Asher's Story

I had always thought that strokes were something that only happened to the elderly; was I ever wrong.

By looking at our family, most people would never know the journey we have been on during the past 17 months. It is still difficult for me to even believe it! In 2010 I became pregnant with our third baby. I was so excited but nervous of the pregnancy after previously having two high risk pregnancies, I was not sure what to expect.

It turned out to be an amazing pregnancy with no complications or concerns whatsoever. I had an amazing midwife who encouraged me to take an early leave from work so that it would be a healthy pregnancy and so that I could enjoy time with our son and daughter before our baby arrived in the fall!

After 3 weeks of on and off and several visits to the hospital, Saturday Oct. 9th came and the midwife said that I was finally in active labour and she broke my water. I was relaxed and excited! Our two children were away at their grandparents for the weekend enjoying Thanksgiving dinners and our new baby was about to arrive, everything was coming together so well. After breaking my water, labour stopped. I was transferred care to the OB on call (who was visiting from out of town) and my midwife continued to encourage me through the on and off labour. My husband Jesse had joked for 3 weeks
that I had to hang on until 10/10/10, and I would say “I’m not waiting that long! I want him to come
soon!”

After pushing for over an hour, I looked up and saw the midwife and doctor’s faces. I knew there was something wrong. They exchanged quiet words and then the doctor looked at me and said they needed to get the baby out, he was not tolerating the contractions. His heart rate was dropping during every contraction. Asher Jess Treowan Britton was born on Thanksgiving Sunday 10/10/10 weighing 8lbs 13oz at 8:13am via C-Section! With APGAR scores of 9 and 10 we were so thankful he was alright!

Our joy soon turned to concern. Not all at once, but after having 2 babies we knew there were some things that didn’t add up. He was very lethargic – sleeping constantly and not waking up to eat. Milk poured from his mouth when he did eat, and he had a very high respiration rate. His blood pressures were different on each side (which was excused as a student nurse error) and his feet were blue (which we were told was from the ink from his foot prints). At around the 35 hour mark, a nurse walked into our room and took one look at Asher and called the paediatrician on call. By 11pm that night they did a chest x-ray assuming he had a chest infection but quickly saw that his heart was on the “large” side slightly out of place. The paediatrician transferred him by ambulance at 1am to London, ON to be seen by the Cardiologists there. I was not allowed to go as I was still recovering from the C-Section. Jesse followed in the dark not knowing what was before us. As I walked back to my room from special care, I had never felt so alone in my life. I had never considered having an unhealthy baby. Babies are born every day and aren’t whisked away in the middle of the night without their mothers.

Asher was in London for less than 10 hours. They diagnosed him with Interrupted Aortic Arch Type B. His fetal bypass functions were keeping him alive, but as they shut down, his body was shutting down. They gave him prostaglandin to keep the blood flowing while they transferred him to Sick Kids. The symptoms all made sense as we looked back at his short life. Along with his cardiac diagnosis, we received the information that this rare heart defect was almost always associated with some type of
syndrome. The geneticists were involved immediately and began their testing. We were barely processing the fact that our newborn needed open heart surgery let alone the fact that he probably had a genetic syndrome! It was so much to absorb.

At just 4 days old, Asher had his first repair. They repaired the Arch and closed his ASD as well as widened his Aortic Valve. Just 6 hours after surgery while in CCCU and while the surgeons were checking on him, Asher suffered a cardiac arrest that forced them to re-open his sternum. They left his sternum open for just over 2 weeks, and after 2 failed closures, they successfully closed our baby. After closure, his arrhythmias began. It was over 2 weeks before he was diagnosed with Atrial Ectopic Tachycardia. While seeing his heart rate go from 120 to 230, Dr. Schwartz looked at my tear filled eyes
and said, “it’s ok, he’s going to be ok”. He used the analogy of watching your favourite sports team. “You can’t get too excited with the highs, and you can’t get too upset with the lows.” These words put everything into perspective for us as we realized this was part of the journey Asher was on, there would be steps forward and steps back. During his stay in CCCU, we received the news that Asher had a rare genetic syndrome called CHARGE Syndrome and that his cardiac condition was just the main issue but
there would be many other medical conditions that would need attention. We were given a list of percentages of problems that he may or may not have.

His arrhythmias kept him in hospital until he was 3 months old. Once they were satisfied with the medicine combination and its effectiveness we were sent home with the knowledge that his Aortic Valve was still not wide enough and would need intervention sometime in the future.

That sometime came a lot faster than everyone expected and at 5 months old Asher had his second open heart repair – the Ross/Kono procedure. Dr. Van Arsdell removed his Aortic Valve and replaced it with his Pulmonary Valve then put a bovine jugular in his Pulmonary position! Amazing! Approximately 6 hours after surgery Asher had his second cardiac arrest brought on by an episode of pulmonary hypertension. Thankfully it happened at shift change when there were so many in the room to help save him. After over a week in CCCU, Asher was up in 4D with all of our familiar nurses and staff. It felt like it was happening so quickly compared to our first experience! Two and a half weeks later we were home.

Today, at 17 months, Asher is still on medication to control his heart rate but he does really well! He has some delays because of his hospitalization and syndrome, but works hard every day to overcome them. He is developing quite the personality, especially since he now has a hearing aid to help him with his hearing loss! Asher’s strength and determination mixed with his joy amaze us – it is a blessing to see how far he has come in such a short time! Asher’s name means “Happy Gift of Hope” and it couldn’t be
more perfect for his life. He truly is our happy gift of hope!

We are forever grateful to Dr. Van Arsdell and the team at Sick Kids who treated Asher like their own, going above and beyond what I ever would have expected to see Asher go home healthy and well. While we know that Asher’s cardiac journey is far from over and he will need “maintenance” surgeries as he grows, we know that at Sick Kids he will always be in good hands!
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