Many of you followed/reacted to/commented on my post Saturday night regarding an ER trip with my daughter. Some of you sent me direct messages. All of you were kind.

I’ve felt for a while there would be some value in posting about our story. Value for the readers certainly, but maybe even more for me. I’m going to view this process as therapeutic. What our family went through over a 4-year period is still something we are dealing with. I think writing about it could be helpful. So today here is Part One.

In early 2013, my wife and our 13-month-old son moved from Utah to England for work. England was still in the grips of one of the coldest winters in recent memory and the small, Central London apartment we stayed in while looking for long-term housing had some heating issues. This was more stress than we needed. We were already exhausted from selling our house and vehicles and coordinating an international move. To make matters worse, someone forgot to tell our toddler about the time change! His sleep schedule (and by extension ours) was messed up. We took turns staying up with him. None of us were getting enough sleep..

I started work a few days later in our European HQ, just west of London and not too far from Heathrow airport. I think it was my third day of work and one week exactly since our arrival in England that I got a distressing call from my wife, who was 9 weeks pregnant. She was cramping and bleeding. Not good. I rushed to the train station and got back to the apartment as soon as I could, but she had already miscarried. We eventually walked to the A&E (equivalent of our ER) at a nearby hospital to make sure my wife was OK and to check for potential complications. She was examined and referred to local healthcare providers for follow-up.

It was rough, dealing with that while already so tired and without any support structure. But we eked through it and were left wondering if the stress of the move contributed to the miscarriage.

My wife and I got married later in life and the window for having kids was closing. So we were delighted to get another pregnancy that summer (still 2013). Our first scan, at 20 weeks, was just before Christmas. The technicians told us we were having a little girl and could we come back after the weekend because they couldn’t get a good look at the baby’s heart? Sure. I thought nothing of it, but my wife was concerned.

Turns out, she had good reason to be. The follow-up scan showed the baby’s heart wasn’t developing properly. The left side of the heart was smaller than the right side and there was a narrowing (coarctation) of the aorta.

This was bad news. We were referred to a fetal cardiologist at the Royal Brompton Hospital in South Kensington, London. We’d see this doctor every 3-4 weeks until the baby was born. The routine was the same - a long echocardiogram where the doctor took lots of measurements of the baby’s heart, a break while she examined the results, followed by a consultation of what the echo revealed.

Many of these visits ended with worse news than the prior visit. This list of problems grew: possible bicuspid aortic valve (two leaflets instead of three), possible outlet ventricular septal defect (a hole in the wall separating the two lower chambers of the heart), borderline left ventricle (that is, it could be too small to sustain life, pending additional pre-birth growth), restricted mitral valve opening (the mitral valve regulates blood flow into the left ventricle from the left atrium).

I remember on two separate occasions she (our fetal cardiologist) made it clear that given the baby’s complications and the uncertainty that she would be able to live once born, abortion was a viable option. She asked us if we wanted to continue with the pregnancy. We were determined to give this child a chance. Abortion wasn’t an option.

I didn’t fully appreciate the significance of her asking us if we wanted to abort. I took much of this in very stoically and showed little emotion. If I was going to have an emotional meltdown, it would be later. But when your fetal cardiologist, the person most familiar with your baby’s heart and it’s pre-birth development is suggesting abortion as a viable option, then maybe things were more serious than I realized at the time..

My wife’s mother had flown in to help during this crazy time and to stay with our now two-year-old son when we had to be gone. We didn’t have close enough connections with anyone local to care for him. Thank goodness for my mother-in-law.

Finally, the day came for a scheduled induction (late Spring of 2014). We arrived early Friday morning at a hospital in Surrey, just outside of London. My wife was induced and it was a slow and painful labor with our baby girl being born early Saturday morning. We got to hold her briefly until she was whisked away to the NICU. Later that afternoon an ambulance with a mobile incubator came and I rode with our newborn into London to the Royal Brompton where surgery would take place the next day to fix the narrowing in the baby’s aorta. The hope was that by fixing that issue, enough blood would pump through her heart that it would expand the left ventricle to a workable size. Apparently, the heart is somewhat elastic and so they used a metaphor to explain - it was sort of like blowing air into a balloon.

We held a ward fast the Sunday before specifically asking that this surgery work and that her left ventricle would expand enough to sustain her. We did not want to have to go the single ventricle route, which would require three surgeries over a period of a few years to re-plumb her heart from a two-pump heart to a one-pump heart. Quick heart anatomy lesson: the heart has four chambers, two ventricles, and two atria. The atria are collection chambers. The ventricles are pump chambers. Valves help regulate the flow of blood into, between, and out of the chambers.

On Saturday evening, to the alarm of the hospital staff in Surrey, my wife checked herself out and drove our car into London to the Royal Brompton. I figured I’d just use public transit to get to the hospital and pick up the car later, so I don’t recall why we thought it would be OK for my wife to drive it into London (it was a horrible idea). To recap, she had been in labor for about 20 hours, had given birth that morning, and hadn’t slept in 36 hours.

Any man who thinks men are stronger than women is a fool.

We stayed the night in a small room in what I will call a hospital dormitory, a walk of just a few minutes from the Royal Brompton hospital. Our baby girl would go into her first heart surgery Sunday morning.

And that’s where Part Two will begin.