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Ryan Smethurst's Story (as told by his mother, Heidi)

Condition: TGA with VSD

May 24/05

Six years ago today, I was juggling life with a newborn, a two and a half year old, and an almost five year old. Ryan was born on May 5th, 1999 at the Peace Arch Hospital in White Rock, British Columbia, at 12:36 a.m.

It was a quick labor and delivery (about 35 minutes). We were thrilled to be adding to our family and Ryan appeared to be the picture of health; chubby, blonde, and blue eyed. He gained weight at week one and week two of his check up, but our family doctor was concerned with his breathing. “Come back at week four, for a follow-up” she told us. Fast forward to June 4th, “let’s get a second opinion”. So, off I went to the Peace Arch Hospital to meet with the pediatrician during his hospital visits.

As he listened to Ryan’s heart, then wrapped an O2 sat around his finger, and watched the read out bounce from 45-65, I knew that Ryan wasn’t ok. He suggested that Dave join me (Dave was back and forth to Calgary setting up his new business); thankfully, Dave was in White Rock; to go together to B.C. Children’s Hospital and bring "the letter’ to Dr. Human. That night we were introduced to the stark, sterile world of hospitals, procedures, tests, and three words – congenital heart defect. Dr. Human calmly explained that Ryan had a VSD and a TGA that required an emergency septostomy to increase oxygenated blood to his body. Our lovely, perfect baby was taken away to undergo his first invasive procedure. We were in shock…

I remember lying on the waiting room chairs praying Ryan would be ok. Finally, Dr. Human came out at around 1:30 a.m. and told us that he had done very well and was now stable.

Next stop – ICU. Both Dave and I were “walking zombies” as we tried to adjust to the “ICU world”. The nurses were very gentle and understanding and assured us that Ryan wasn’t in any pain. Up until this point we had not had the opportunity to speak to our families. How were we going to explain the events of the first 24 hours of this nightmare? The first challenge was to explain to Ryan’s brother Evan and his big sister Erika as they sensed the stress and concern surrounding their little baby brother. That weekend we prepared for Ryan’s big surgery scheduled on Monday, June 7th at 8 a.m. We met with Dr. Sett who explained the procedure and risks associated to Ryan’s serious condition. We trusted this man, his skills and expertise, with the life of our son. We felt Ryan was in good hands.

That morning, handing Ryan over to the surgical nurse, was probably the most difficult thing that Dave and I ever had to do. Ryan was sucking his soother and gazed up to us with calm, peaceful eyes almost telling us, “Mom and Dad, I’m going to be ok”. June 7th was the longest day of our lives; we paced around the hospital grounds several times hoping the pager they gave us would beep to tell us that Ryan was out of surgery. It never beeped, instead we checked in with Gwen Rempel our nurse clinician. The surgery was to have been 6 – 8 hours; at 4:00, Dr. Sett was not happy with the repair and had to put Ryan back onto ECMO, which extended his surgery by another four hours. At 8:40 p.m., Dr. Human came out and told us that the next 72 hours were critical. We would be able to see Ryan once he was stabilized, which turned out to be 1:00 a.m.

We could not believe our eyes. Our little baby was full of tubes, wires, and monitors. His body was very swollen; his features were pale as he lie there so still. The hard work was just beginning. Time was marked in 4-hour increments – 4, 8, 12, 16, 20, 24 – Day 1…30, 36, 42, 48 – Day 2…54, 60, 66 – Day 3. Ryan had his ups and downs that weighed heavy on all of us. Dr. Sett seemed to be at his bedside often. Dr. Human and the ICU team were cautious, not really telling us too much as we hung on every word discussed about Ryan’s condition. Prayers from family, friends, and a prayer chain around the world kept us buoyed through the grueling hours that lie ahead. It was up to Ryan and his little spirit; with each passing hour he got stronger and stronger. We nicknamed him “Private Ryan” after the academy award-winning movie, “Saving Private Ryan”.

The ICU team, needless to say, was incredible. His nurses were so understanding and thoughtful in our time of high stress. Day 5 – Ryan’s sternum was finally closed as he began to take on his cherub features once again. Soon he would be well enough to go to 3G where we once again were able to hold him and just be with him. Soon he was nursing again and back to his old self. On Day 23 of the incredible journey, Ryan was discharged. With mixed feelings of joy and anxiety we brought Ryan home to family and friends. While in the hospital, the movers had taken our things, so the gathering was hosted by our neighbors. This was a chance to say good-bye and to celebrate Ryan’s amazing recovery.

The next day we left for Calgary to start another chapter in our life. Upon arriving in Calgary we were busy reconnecting with old friends. At our friends’ wedding, an emotional groom delivered a teary-eyed welcome to Ryan, describing him as a “miracle baby”. A few days later, I stood up for my sister’s wedding on June 30th with Ryan sleeping peacefully in his stroller.

On July 2nd, I met with Dr. Harder, Patty Knox, Barb, and the Calgary cardiology team. Today these people have all become very special and important people in Ryan’s life. They have also impacted my life in many ways.

Approximately 90 days post operation our nightmare was relived when Ryan’s progress changed. A new term was introduced to us and a whole new stress level began. The right side of Ryan’s heart went into failure, and he crashed quickly. The Calgary team had to make some tough decisions on what to do, as the B.C. team who performed the surgery wanted him air-evacuated back to B.C. Children’s Hospital. Stabilized, but once again very sick, our now 4-month old baby was on another journey and we were on “pins and needles” trying to make sense of it. The decision – get Ryan to B.C. Children’s Hospital as quickly as possible so that Dr. Sett, Ryan’s original surgeon could determine what had happened. Ryan and I, along with paramedics and a cardiology nurse were rushed by ambulance to the Calgary airport to fly in a special plane back to B.C. Dr. Human and Dr. Sett determined that Ryan’s pulmonary artery had developed a stenosis due to scar tissue from the surgery. They performed an angioplasty, which took care of the problem. Ryan and I were back in Calgary about a week later. Since that fall of 99’, Ryan has had his annual check-up with good results, other than last June Ryan had his second angioplasty procedure. Today, Ryan is a healthy, active kid that enjoys life to the fullest.

Well, that’s our story. I’m sorry, it’s a little long winded, but once I got started, I couldn’t stop. I haven’t written down that experience since we went through it. My husband Dave who had kept a journal of the whole event has not read it to this day, as the emotions still run deep.

Ryan just had his annual exam and he is doing well. God works in mysterious ways and I look at the doors that have opened, the wonderful people we have met, the changed life perspective, and I say thank you. Ryan is a wonderful boy; he isn’t aware of his courage or strength, but I know he will use it to change the world in some way.

Thank you for giving me a change to tell our story.