Jonathan's Journey Part II

At about 5:30 p.m., we were in Dr. Hornberger’s office getting the diagnosis. I thought my heart would break. She told us Jonathan had Hypoplastic Left Heart Syndrome – a very serious heart condition where the left ventricle doesn't develop properly. We were given four options. The first was to terminate the pregnancy – something that we never even considered. The second was compassionate care – Jonathan would be born and made comfortable, but nothing would be done. The doctors would just make sure that he wasn't in any pain until he passed away. That thought just broke our hearts. Our third option was a three stage surgery – the first to be completed only days after Jonathan was born, the second when he was about 6 months old and the third at some point after second birthday. The final option was heart transplant. Because of the small number of infant hearts available, this option was not recommended.

We chose to go with the three stage surgery. Dr. Hornberger explained what would be done with each surgery and we were confident that Jonathan would be just fine (at least Scott was, I was just VERY worried!)

We were told that Jonathan would be delivered at Mount Sinai hospital so that he could be transferred to HSC (right across the street) shortly after he were born.

I began bi-weekly treks downtown to Mount Sinai for ultrasounds (I got to see Jonathan often!) and check ups with a pair of new obstetricians. Dr. Ryan and Dr. Seaward were very patient with me and answered all of my questions

Just before Christmas, Jonathan gave us a bit of a scare, and I thought for sure he would come early. We headed down to Mount Sinai so I could get checked out. They hooked me up to some monitors so they could check on Jonathan. It turns out that he just wanted to make sure we were paying attention and was letting us know that I needed to take a bit of a break and slow down.

Scott and I met with pediatricians, neonatologists and lots of other important people to ensure that Jonathan would be safe when he was born. We were told that we might not be able to see him right after his birth, because he might need to be ventilated in order to help him breathe.

After visiting the Special Pregnancy Clinic at Mount Sinai for four months, we found out when Jonathan's cardiologist would be on call and scheduled his birth for January 21^st, 2003. I waited for a call from Dr. Seaward's nurse Christine and she said Jonathan would be born around 1 p.m. on that date.

Jonathan's Story

It all started with a routine ultrasound on Sept. 12th, 2002. I was just past 18 weeks along and went for my ultrasound before hopping on a plane to Nova Scotia to help celebrate my uncle's retirement/birthday. I had a GREAT time while I was there.

On Monday, Sept. 16th, I got a call from my obstetrician while I was downstairs at the bus stop picking up Colin after school. By the time I got back upstairs, the office was closed.

On Tuesday morning, after dropping Colin off at the bus stop, I came back upstairs to call the OB office and before I had a chance to pick up the phone, they called me. I was told that the technician who did my ultrasound had been unable to get a clear picture of all four chambers and that I had an appointment at Sick Kids the following afternoon.

The first thought through my head was, "Not again." Jonathan's big sister Lauren has a heart condition too and we were told that the odds of having another child with a heart condition were pretty slim and that IF we did, it would likely be another girl. Right.

Nothing at Sick Kids moves as fast as we got our appointment unless it's serious, so I already knew we were in for a ride.

Scott and I arrived at the hospital for our 2:45 p.m. appt. on Sept. 18th. There were other fetal echos ahead of us so we weren't seen until almost 4 p.m. Having seen my fair share of echos with Lauren, I knew as soon as the technician made the first the pass over the heart that something was VERY wrong. Our fears were confirmed when the echo was done and we met with the cardiologist...