Meg and I thought we would periodically add posts to a series called “Checking In”. These posts will be a bit shorter and more “to the point”, and will primarily summarize any new information we’ve learned from the appointments we attend. Although they’ll contain less reflection, we hope they serve as a useful source of information and a quick update on how we’re all doing.

We’re currently seeing three specialists: a primary obstetrician (POB), a high-risk obstetrician (HROB) and a pediatric cardiologist (PC). On Halloween, we had an appointment with our POB, Dr. Uma Penmetsa, at Park West Women’s Health. The appointment was anything but spooky. Dr. P has been tremendously supportive and reassuring throughout our pregnancy, and we spent most of the time during this appointment talking about how we’ve processed the single ventricle diagnosis and what treatment will look like moving forward. Following the lead of a good friend, I have taken the role of scribe during our appointments, jotting down notes to gather our thoughts and questions to ask other specialists at future appointments. Dr. P gave us some helpful things to think about and some insightful questions to ask during our first appointment with our PC this Monday, November 5.

As we always do, we ended the appointment hearing Teddy’s heartbeat through a Doppler — another appointment, another healthy heartbeat. It is amazing to us that even with a single ventricle, in the womb a baby can have such a strong heartbeat. Meg and I agreed during our debrief after the appointment that the sound of that heartbeat will never get old.

Meg and I learned we were pregnant around six weeks along, and the six weeks that followed were predominated by feelings of joy, excitement, gratefulness and a sense of ease. I remember walking into our 12-week ultrasound with a level of confidence that bordered on unfounded invulnerability. I felt on top of the world and genuinely, yet naively, believed nothing could go wrong.

Teddy wasn’t exactly cooperative during our first few ultrasounds. When he wasn’t doing flips during his 12-week scan, he was contorting his body in ways that made whatever the sonographer was trying to look at nearly impossible to see. In between bouts of frustration and impatience, we revered his existence. There simply had been no feeling as first-time parents like seeing your child on a small black and white monitor in below average resolution showing crystal clear resemblances of his father’s recalcitrance.

When the sonographer told us that Teddy’s nuchal fold — the area containing fluid behind his neck — measured around seven millimeters thick, and that they typically liked to see this measurement under three millimeters, initially I was confused.  Did that mean something was wrong? That couldn’t possibly be the case . . .  The sonographer was so calm as she reported her findings. Only a few minutes later would Meg tell me as tears ran down her face that she knew something was off when the sonographer’s hand holding the probe started trembling on her belly. Seconds later the sonographer would deliver the results.

The feelings that followed may best be characterized as deep fear and uncertainty. Would we lose our child? What was causing his symptom? We were told that causes could range from a genetic defect, to a virus, to a heart condition, to an innocuous anomaly, and that only time would tell. In a matter of minutes, the foundation upon which our prior optimism had been built was shaken to its core. We didn’t know at the time that we would be tried, strengthened and shaped in a way that would bring us closer together and more resolute in our love and commitment to our precious boy. In the meantime, we prayed, we cried, we fought and we forgave until the picture became clearer.

It was at our 12-week ultrasound when Meg and I learned that our baby boy had an abnormal nuchal translucency screening. Typically seven is a lucky number. In this case, a nuchal fold seven millimeters thick was more than twice the outer limit of a “normal” reading. After four long weeks waiting for our next ultrasound, we would eventually learn that our baby’s abnormally thick nuchal fold was caused by a rare and complex heart condition called single ventricle defect.

A healthy heart has four chambers: a right and left atrium and a right and left ventricle.  Our 16-week ultrasound showed that our baby’s heart had only three of those chambers. He was missing one of the two ventricles he would eventually need to properly pump blood throughout his body. Three quarters of a heart will get the job done in utero because the baby has his mother to provide oxygenated blood for him that he could not otherwise provide for himself. But until about 35 years ago, a baby could not survive more than a few days after birth with only one ventricle. Medical developments have since opened the door for children with this diagnosis to not only survive, but to also live full and relatively healthy lives.

This is the story of our pregnancy with a child diagnosed with single ventricle defect.  We’ve chosen to live our story with hope, optimism and two and three quarters of hearts full of love.

Why a blog and why now?

Meg and I decided to start a blog for a few reasons. First, we wanted to keep our friends and family up-to-date with the course of our pregnancy and the health of our baby boy, and we found this to be the most efficient way for us to do that. Second, we thought sharing our experience could be of some help to others. Hopefully our perspective provides others facing a similar path with reason to be strong and hopeful. Third, we decided to share our story for ourselves. Meg and I have each grieved — separately and together — and have previously found that healing and growing most readily occur through sharing with and supporting others. And fourth, we decided to start sharing our story now because we have made the decision to commit to doing everything we can to bring a healthy and full life to our first child, Theodore Patrick Becker (Theo to his mother, Teddy to his father).

We’re ready for this journey, acknowledging it will at times be difficult, and we hope you take something — large or small — from our story. Feel free to share it as you see fit. To many, it may have only marginal meaning; to others, it may strike a chord that changes a life for the better. We trust that it will find whom it is meant to find.

[Parenthood] is about raising and celebrating the child you have, not the child you thought you would have. It’s about understanding that he is exactly the person he is supposed to be. And that, if you’re lucky, he just might be the teacher who turns you into the person you’re supposed to be.

— Joan Ryan