Open heart surgery: How digital shaped our son's journey. Part 1: Researching his condition.

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 1: Researching his condition

In August of 2016, on a typical work night after putting our son, Will, down to bed, my husband and I caught up from our day. I asked how Will’s nine-month check up went that morning —my husband said: “still a chunker and at the top of his growth charts developmentally, few tears from shots but otherwise all good.” He went on to casually mention that our pediatrician heard an abnormal heart murmur and recommended we get it checked out by a cardiologist.

“Wait. What?!”

Fear rose within me. I picked up my phone and consulted Dr. Google. There were 2,820,000 results for “abnormal heart murmur in child”. Within one click my anxiety eased, as it quickly revealed “innocent murmurs” were fairly common and often times uneventful. “Most innocent murmurs will go away on their own as a child gets older.”

Whew! "Thanks, Dr. Google."

Following our pediatrician's referral, within a few weeks we found ourselves in the cardiologist’s waiting room among several other families. Will had started to walk. As he roamed the floors playfully, I sat with disbelief. Look at this kid. He can’t have a heart problem. 

A not-so innocent murmur

The cardiologist performed several tests, a chest X-ray’ an electrocardiogram (EKG) that measures the heart's electrical activity; and an echocardiogram (echo): a picture of the heart made using sound waves.

I laid on the table next to Will as the ultrasound tech performed the echo. As he moved the wand around his chest the screen lit up vibrantly — red, blue, some white, even a little yellow. I had no idea what to make of it. We then went back to our room to wait out the results. After what felt like an eternity, the cardiologist entered the room with an assistant. Before speaking to us, they both listened to Will’s heart. I knew this wasn’t the “innocent murmur” Dr. Google told me about. 

Our cardiologist then informed us that Will’s heart murmur was uncommon in children — it was caused by mitral valve regurgitation (MR). MR is leakage of blood backward through the mitral valve each time the left ventricle contracts, creating a loud, fluttering heartbeat.

Our cardiologist explained that Will’s regurgitation was mild. There was the potential that he would need medication, such as diuretics and blood thinners in his teenage years but “right now, there were no restrictions, the sky's the limit, he’s a normal kiddo. As he grows and his heart grows, we’ll watch and see.”

“Restrictions?” we asked.

 A lump formed in my throat and an ache in my heart as I looked over at my husband, a former collegiate athlete, sporting his Regents School Dri-FIT shirt he’d worn the past three years when volunteer coaching the middle school football teams. Will was a mini-me of him, big for his age and already with his father’s dimples. It’s almost everyday someone says to us, “Will’s going to be big and strong and play football like his daddy.” 

“Would he be able to play football, basketball, run track – all the things we did growing up?”

The worries sat in our minds. But of course we were thankful that he was okay and intervention was not required. As we packed our things, the cardiologist made a point, “This is not your grandma’s mitral valve regurgitation — avoid the Google rabbit hole.”

Being in the digital marketing space for the majority of my career, what I took away from Dr. Shaffer’s advice was Google would surface a lot of concerning content and outcomes that were relevant to adults, not Will. I heeded the advice and did steer clear of Dr. Google, for a little while.

The dreaded three words

Fast forward six months to our next check up. Will was fifteen months old. We decided to consult a different cardiologist to get a second opinion. It was Dr. Shapiro who would find the cause of Will’s uncommon mitral valve regurgitation — a hole in his heart, in his mitral valve — known as an isolated mitral valve cleft (MVC).”

Our cardiologist then said the dreaded three words, Will would eventually need “open. heart. surgery.” to repair his mitral valve. He told us it was inevitable. But when would depend on when Will’s heart started to show signs of stress. It could be six months, six years or much longer.

And so our journey through open heart surgery began...

Back to Dr. Google

I frantically went back to Doctor Google. This time looking for:

“Mitral Valve Cleft” [Enter].

“Kids with Mitral Valve Cleft” [Enter].

“Mortality Rates of Mitral Valve Cleft in children” [Enter].

As any terrified parent would, I was seeking to find success stories of other kids who had this condition repaired. I wanted to understand the odds, statistics, mortality rates—and I wanted hope. I could not find much useful information, especially on children, except for this particular study from 2009. One line stuck out, “The median time to surgical intervention from the initial diagnosis was 15.7 months.” So... that means Will would be two-and-a-half years old. And facing the greatest challenge of his life.

I found pediatric congenital heart programs on hospital websites but rarely was Mitral Valve Cleft mentioned. How would I find the right surgeon who specialized in this repair? While most hospitals had bio pages for their surgeons none of them listed familiarity with Will’s specific issue.

It was time to go to my trusted source. Read Part 2: Connecting with Parents.

Open heart surgery: How digital shaped our son's journey.

Part 1: Researching his condition

Part 2: Connecting with Parents

Part 3: Choosing a Surgeon

4 Digital Marketing Tips for Hospitals and Surgeons:

1. Hospitals: increase your SEO and get some dedicated landing pages for unique conditions, ie. search queries). Dr. Google can be a helpful resource if relevant content exists.
2. Cardiologists: connect patients with local communities/groups during in office appointments.
3. Surgeons: take more control over your biography pages, add personality and more in -depth collection of your digital content.
4. Healthcare Industry: Modernize how patients and caregivers research and find surgeons. LinkedIn exists for businesses to vet prospective candidates. What would a modern directory look like?

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

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

Source Links

• About Heart Murmurs
• About MVR
• 2009 Study

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.