Owen’s Story

Shone's Complex & Hypoplastic Left Heart Complex

Nothing could prepare me for what should have been a routine 20-week ultrasound during my last pregnancy. I can still picture the ultrasound tech scanning the heart over and over – and remember watching her type in "4 Chamber Heart." It wouldn't be till one week later that we had our Level II ultrasound and fetal echocardiogram to confirm the fears – our baby had a heart defect.

The next few months continued to be a roller coaster of emotions – mainly because we couldn't lock in a diagnosis. What we did know is that the entire left side of the heart was underdeveloped and that there was a coarctation (a pinch) in the aorta. Our little boy had a quirky little heart and no one could tell us with any certainty how it would or would not work after he was born.

We had time to educate ourselves, choose our surgeons and hospitals and prepare our other two boys for their new baby brother. We told our sons – 5 and 4 years old – that While with this dire news we were given a precious gift – time. their baby brother's heart was broken and that the doctors would try and fix it. We were always positive and hopeful around them. However, it still shocked me when Carter, age 4, told us, "If the doctors can't fix his heart, no baby brother." Most important was that we name our little boy and spread the word about his future arrival – never hurts to have too many people thinking about you during your darkest hours.

Owen Maxwell Ferguson was born on March 12, 2008. He was four weeks early, but arrival could not have been planned any more perfectly. Just the day before we had a meeting at Northwest Community Hospital to plan Owen's birth and transfer to Children's Hospital of Wisconsin. When the meeting ended, we were confident that everything would work on our planned induction date later that month. That night Owen decided he was tired of waiting and I went into labor and delivered him the next morning. By 3:00 p.m. he was on his way up to Wisconsin while I recovered in Illinois.

Owen's first 48 hours were a roller coaster – two echocardiograms, drugs to keep his heart working and a possible infection kept everyone on their toes. We were blessed with our timing – Owen arrived on a Wednesday and the surgeons discuss upcoming complicated cases on Thursday mornings. We were the talk of the meeting. On Sunday, March 16 – Palm Sunday - Owen had his coarctation repair of the aortic arch with hopes that by doing so his heart will grow enough to support itself.

Before Owen was born we anticipated a lengthy hospital stay. After just two weeks Owen was given the thumbs up to go home – and we eagerly drove three boys back to Illinois.

When Owen celebrated his first birthday we marked the milestone with a celebration for friends and family who supported us during our first year. While Owen still had frequent trips to the cardiologist – he had made it to his first birthday without a second surgery. In December 2010 we had another echo that showed things looked about the same but the MDs were still concerned about the pressures in his heart.

The options they were considering were another echo, an MRI of the heart, or cardiac catheterization. After doing a 24-hour Holter monitor to determine Owen had a normal heart rhythm, our next appointment was scheduled for April 2010.

What was a quick appointment – sedated echo and a quick listen by the MD also gave us the news we did not want to hear. The anatomy of Owen's heart was causing the pressures to increase and warranted surgery. Since our schedules were pretty flexible, we were willing to come up at a moment's notice rather than wait till the June 8th surgery date originally slated for Owen. In May we received such a call and on Tuesday, May 11th Owen had his first open-heart surgery.

Owen's repair consisted of removing a ring above the mitral valve and removing sub-aortic membranes below the aortic valve. He was on the bypass machine for over 130 minutes and came out of surgery looking wonderful, breathing on his own. The first 24 hours were a little rough (he was not a happy camper) but Owen slowly came around. On Friday, three days after surgery, Owen danced to some music and did a little jump off the floor. The next day Owen was discharged home only four days after open-heart surgery.

His recovery has been amazing. We always considered his defect to be asymptomatic - he never had blue spells and his oxygen saturation was always normal. However, the change just within two weeks of surgery was shocking. He rarely spoke prior to surgery – now he does not stop talking to us, his brothers, and even himself during the day. Prior to surgery he would sit for cartoons or playing with small toys on the floor. Not anymore – non-stop movement from morning till bedtime.

With the nature of Owen's defects - his mitral valve is still undersized and his aortic valve is bicuspid and has a small leak – we do not know what the future holds. Surgery in the near future is quite slim and everyone is hopeful his valves will last until adulthood. For all he has been through these past two years, it is easy to forget when you watch him run, jump and play with the biggest smile on his face. He enjoys each and every day and has taught us to do the same.

Owen's current heart diagnosis is Shone's Complex & Hypoplastic Left Heart Complex.

Written by: Tiffany Ferguson, Owen's mom