Open heart surgery: How digital shaped our son's journey. Part 2: Connecting with Parents

Megan Coffey is the Chief Creative Officer at Springbox, a digital agency in Austin, Texas. At eight months pregnant with her second son, she and her husband received the dreaded news —their older son, Will, just 2.5 years of age, would be facing the greatest challenge of his life — open heart surgery. This is their family's journey shared in four parts. See how digital influenced their care and guided critical decisions along the way.

Part 2: Connecting with parents

After many failed attempts at finding information specific to Will’s condition, Dr. Google surfaced a congenital heart disease (CHD) peer-to-peer support group, Mended Little Hearts. They offered a parent matching program that would put me in touch with a member whose child had a similar condition to Will’s. Perfect, exactly what I was looking for, another mom whose kiddo has what Will has, a hole in his mitral valve (MVC).

Heart Mom... for life

I anxiously awaited to be connected. We exchanged emails and set-up a time to chat. I was excited to talk to someone who could give me hope. Within minutes, I was faced with the reality, that this mom so bluntly pronounced, “You are a Heart Mom now... for life” and your son, “He’s a Heart Warrior”. While I now wear this label as a badge of honor, at the time it was daunting.

"A Heart Mom. For life?”

With an air of confidence, I shared that Will’s condition was rare in its isolation (meaning that a hole in the mitral valve (MVC) was typically combined with several other heart abnormalities) but Will had no other heart issues detected. The doctors felt strongly that once repaired he’d be unrestricted and free of future problems. This mom strikingly shared, “There is no such thing as one and done when it comes to heart surgery”.

Was she right? While open heart surgery was terrifying to consider, I was still holding onto the hope that once completed we’d be out of the woods... FOR LIFE. Would they find more problems?

Advice for Heart Moms — Heart journeys are unique; there are no two alike. Be gentle and reserved when talking with other parents. Refrain from assuming your path will be the same as others. Listen and ask questions. Here’s a few to start with:

1. Where are you in your journey? (Just diagnosed, researching hospitals, etc.)
2. What would you like to know about my journey? (How can your experience help this mom? Don’t just share to share. Be relevant to them. Be mindful. Take breaks and ask, “How are you doing? Would you like to know more?” before continuing.)
3. Can I connect you to other moms? Are you apart of any heart communities? (Help each other connect to others. Recognize that you may not be the person that has the answers they are seeking.)

While some of what this heart mom told me would be true to our experience, much of it was not and left me in fear.

Going to my trusted source: my mom network. 

I wasn’t ready to blast the internet with our son’s condition, so I sent a private message to a select group of about 24 moms via Facebook Messenger. I knew the moms in this group did not have kiddos with heart conditions, but I hoped at least one of them would know someone who did.

I quickly received personal introductions to other heart moms. I went into these conversations more cautiously. I learned how different and unique each condition and journey could be. I talked to moms whose children were diagnosed in the womb at 22 weeks and had surgeries within hours of being born, spending months in the hospital before coming home. I chatted with moms whose kid’s conditions required a series of surgeries over many years.

Although the agony of waiting for Will’s heart to show signs of stress was a heavy burden, and the thought of open heart surgery was simply unfathomable;

I began to realize we were lucky.

We knew the issue, there was a solution, and the outcomes were favorable for a healthy and unrestricted life moving forward.

Finding a trusted advisor and advocate

There was one mom that became my backbone and advisor throughout our journey. She was referred by a former co-worker and worked nearby. We met for coffee. I still remember our first meeting, vividly. We shared our journeys. They had spent months in the hospital before coming home after their daughter was born. Her condition required multiple surgeries over the years. I could not imagine what they had been through.

I told her I was scared to see Will in the hospital, to see his incision and all the cords attached to him.

She explained that yes, it is awful to see your kid that way but that they are so resilient. She asked if she could share images of her daughter right after surgery and then just a few days later. It was a relief to see her daughter smiling and back to herself so quickly. This heart mom had a calming presence, but also a fighter spirit. Her strength was contagious. She brought me hope.

She stressed the importance of finding a surgeon who had successfully repaired Will’s specific condition routinely. I peppered her with questions.

“How do I find a hospital? How do I find a surgeon — no one seemed to mention this specific repair. Where do I even begin?”

She was not readily familiar with Will’s condition, but she gave me a place to start.

While her daughter went to Stanford for specialty care, she shared that the nation's #1 Children's Cardiology & Heart Surgery Hospital was just down the road in Houston, Texas. It was Texas Children’s Hospital, “TCH”. She knew many other Austin heart moms whose heart warriors had successful surgeries there.

Headed to Houston

I tapped my growing network of heart moms to see who we should see at TCH. One particular cardiologist Dr. Ocampo, came highly recommended. Our first appointment came when Will was just shy of two years old. I was 8 weeks pregnant with our second son.

Houston was my hometown. My parents and my twin sister and her family were there. This would make commuting for care easier. TCH was near downtown in the massive Texas Medical Center.

Arriving for our appointment was overwhelming. In Austin, our cardiologist offices were standalone two-story buildings with drive-up parking. From valet to the elevators to the 17th floor, the size of the hospital made his condition seem that much more severe.

This is where our son would have open heart surgery. Gulp.

The waiting room was a giant playroom. Will was in heaven.

We knew the drill from our past appointments in Austin: X-ray, EKG, echo… only this time they would use an oral sedative to put Will to sleep to ensure they would get detailed images. Seeing him on hospital bed dressed in a hospital gown was painful to watch, but not as painful as the next 45 minutes. There was the rare chance that the medicine could have a reverse effect. It did.

For the next 45 minutes, Will lost his mind, and so did we.

Will flailed around uncontrollably, eyes open but not really conscious. We had to hold him to keep him from falling or hurting himself. He was a big kid, so that wasn’t easy. We began to think, we’d made all this effort to get here and now we’d have to do it all again. Thankfully, the medical staff waited it out with us and Will finally passed out. We got the echo we needed and learned Will was allergic to this medication.

After several hours, we finally met Dr. Ocampo. She was friendly. She had good news. Will’s mitral valve regurgitation, caused by the hole in his valve, was still mild to moderate. Similar to the cardiologists in Austin, she said we’d wait and see but she felt it would be some time, most likely years, before we’d need to intervene with surgery.

Dr. Ocampo then shared the most hopeful news we had heard to date.

While Will’s condition was uncommon and rare in its isolation, the repair of a mitral valve cleft was very common for surgeons. This was music to our ears. Many surgeons at TCH were experienced in this repair; it was routine for them.

Our search for a surgeon was over, so we thought.

Not what we expected to hear

6 months later we made the trek back to Houston for Will’s next check-up. I was 8 months pregnant. Will was doing great, normal 2.5-year-old, still developmentally top of the charts. We made the most of our trip downtown and went by the Houston Zoo before our appointment that afternoon.

We completed all the lab work and waited for what felt like forever in the small doctors’ room. It was a long day — while we expected it, it’s never easy. Thank you Apple for tablets!

Dr. Ocampo entered the room. We could see her surprise, witnessing I was very pregnant. I could also see her disappointment, I knew something was wrong. She said the words, we didn't expect to hear for many years...

“It’s time.” 

Will’s heart had started to show stress. What was mildly moderate mitral valve regurgitation was now considered severe. His left lower chamber had started to enlarge.

We would need surgery within the next 6 months.

See how our journey led us to Will’s surgeon, Dr. Charles Fraser at Dell Children’s Medical Center of Central Texas in Austin, Texas. Read Part 3: Choosing a surgeon.

Read the full series

Part 1: Researching his condition

Part 2: Connecting with Parents

Part 3: Choosing a Surgeon

Part 4: Surgery

Connect with heart families near you

• Dell Heart Families, Facebook Group
• TCH Heart Families, Facebook Group
• Mended Hearts website, Mended Little Hearts National Organization Facebook Group, Mended Little Hearts Austin Facebook Group
• Heart?Mamas of Texas, Facebook Group
• The Children’s Heart Foundation, Facebook Group

Will's Medical Team

• Pediatrician: Dr. Ava Gallagher, 411 Pediatrics
• Pediatric Cardiologist: Dr. Hanoch Patt, MD, Children's Cardiology Associates
• Heart Surgeon: Dr. Charles D. Fraser Jr, MD, Pediatric and Adult Congenital Heart Surgeon, Texas Center for Pediatric and Congenital Heart Disease Director, Texas Center for Pediatric and Congenital Heart Disease

Special thanks to Jeff Abbott, New York Times bestselling, award-winning author, for inspiring me to share my journey and acting as my assistant wordsmith.

2 Digital Marketing Tips for Hospitals and Heart Communities

A stronger, more informative digital presence is good for you. Good for the hospital. Good for moms.

1. Organized heart communities: train parents on how best to give advice. Follow up with heart moms and get feedback on the matching service.
2. Cardiologists: make sure parents understand the condition. Had we known that Will’s repair was common it would have saved us months of heartache.