Emma's Courageous Journey With Congenital Heart Disease

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Congenital Heart Disease (CHD) is the most common type of birth defect. According to the Children’s Heart Foundation, approximately 40,000 babies in the United States are diagnosed with CHD every year. That’s almost 1 in 100 births. Nearly 25% of these babies require surgery, or other interventions within the first year to survive. Our daughter, Emma, is one of these babies. 

When Emma was a few months old, she was diagnosed with congestive heart failure. At nine months, she underwent open-heart surgery to improve the obstructive defects associated with Shone’s Complex. From the day we received the news of Emma’s heart condition, our journey has been challenging and eye-opening. Finding out that she needed surgery was devastating. We couldn’t wait for the surgery to be over. But we didn’t expect how difficult the recovery would be. 

Post-surgery struggles 

There are treatments and corrections for CHD, but there is no cure. Every defect will require lifelong care. Emma’s recovery is ongoing, and has come with countless worries. Her twice-yearly echocardiograms might not seem like a big deal to others. But with each check-up, we’re reminded that her heart might require another surgery down the line.

The severe weight loss Emma suffered before her surgery exacerbated her developmental delays post-operation. At 10 months old, Emma only weighed 11 pounds with almost no muscle. While her friends were starting to walk, Emma was struggling with basic milestones like tummy time. It became clear that she would experience significant delays. But her doctors urged us to not “skip” any milestones. They suggested that we “reschedule” her milestones, instead of seeing Emma as delayed. We knew we would spend significant time helping her catch up. Emma finally walked when she was 23 months. 

Children with severe CHD are more sensitive to illnesses. The left-side heart obstructions associated with Shone’s Complex make Emma’s lung tissue more susceptible to infections. During the first four months post-surgery, Emma wasn’t able to be around other kids out of concern that she would contract an illness. In her second year of recovery, she was diagnosed with pneumonia four times. Even today, we are still on edge whenever Emma contracts an infection. 

We couldn’t always do things by the book

When Emma was born, we began developing our parenting philosophy based on the advice of vetted experts like Dr. Dan Siegel and Janet Lansbury. But after her surgery, Emma was weak and struggling to catch up. We needed to use whatever tools we could to motivate her.

Sometimes this meant moving away from our original philosophy. We had always planned to limit screen time through toddlerhood. But Emma loved her mamma’s phone and was determined to get it whenever possible. When we realized that a little bit of screen time motivated a lot of crawling, we started playing Elmo music videos across the floor to get her moving.

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We also wanted to encourage Emma’s independence with baby-led weaning. We were excited for her to be able to explore nourishing food and different textures. However, Emma was severely underweight and wasn’t even able to sit up by herself at 10 months old. Since nourishment and weight gain were more critical than exploration, we chose to continue spoon feeding her high calorie food purées. 

The illness put stress on our marriage

Common stressors of marriage are amplified by the pressures of caring for a child with an illness, or significant delays.

The two biggest stressors in our marriage were time and parenting styles. With our families far away, we had to rely on hired help. But we were concerned that a nanny couldn’t meet Emma’s needs and we felt like we needed to be involved at all times. With two busy careers, we often struggled to find the balance between our jobs and helping Emma. This left us with no time to focus on our marriage, and soon it seemed like our only conversations were small arguments.

Additionally, our approaches to parenting didn’t always mesh. With no literature to help decide who was right or wrong, the heated debates could seem endless at times. As Emma’s mom, I pleaded for a soft approach since Emma had already been through so much. For the first few months post-surgery, Emma hated physical therapy and would scream through entire sessions. Jon was more aggressive with Emma’s therapy, fearing how far behind she might fall.

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There is a silver lining

It’s now been 3 years since Emma’s surgery. With a new perspective, we recognize that our journey with Emma has a silver lining. As her parents, our priorities and views on life have changed. As long as Emma is healthy, we try not to sweat the small stuff. We realize that we are very fortunate to spend every day making memories with our amazing daughter.

Pernilla & Jon

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We are a Santa Monica family. Our daughter, Emma is our “Swedest” little girl and our biggest inspiration. She is a happy, chatty and bossy toddler. She attends an awesome preschool and is a huge Mary Poppins fan. She is currently learning her 3rd language, Mandarin. Pernilla was born in Sweden. With two sisters, she grew up in a family strongly influenced by the Waldorf philosophy. Pernilla works as journalist for People Magazine. Outside of work, her life is all about Emma. Together, they love beach outings, park dates and cooking. Jon grew up in a traditional midwestern household in Cleveland, Ohio. He works as a corporate finance consultant and holds a CFA Charter.  He enjoys riding his motorcycle through the canyons and engaging in other high-risk activities…like feeding his daughter after dressing for work. His favorite times with Emma are their Saturday daddy-daughter breakfast and hiking dates. We also blog about family life, work life and metropolitan lifestyle.

Check out their blog: www.swedest.com and follow them on IG: @swedest_la or Facebook: @swedest.la