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The Power of Writing a Children's Book About My Daughter's Congenital Heart Disease

The Mighty logo The Mighty 9/25/2021 Nisha Gutierrez-Jaime
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Twenty years ago I was a high school cheerleader who dreamt of becoming a journalist. I was lucky enough to meet a local TV reporter one night while cheering during a Friday night football game and to this day I still remember the piece of advice he gave me — write what you know.

Today I am a Los Angeles-based journalist, but more importantly, I am a mama to twin, 7-year-old boys who were born premature and a 3-year-old little girl who was born with the complex congenital heart disease, Tetralogy of Fallot (TOF).

Writing has always been my creative outlet. It has allowed me to share other people’s triumphs and tragedies through my work as a journalist, and has also allowed me to release my innermost feelings — both happiness and heartache.

After becoming a mama to medically complex babies my heart and mental health took a hit, so I took that TV reporter’s advice and turned to what I knew best as a way to cope — writing. I first wrote blogs about the experience I shared with my twin boys while they were in the neonatal intensive care unit as newborns. And when my daughter was born, I continued to write about her congenital heart disease diagnosis and the three open-heart surgeries she’s battled through since then.

Writing has absolutely been therapeutic, and brave, resilient children continue to be my inspiration.

Three years ago when my daughter was almost 1 year old, my family moved to a new home to be closer to her cardiologist. You can imagine my surprise and bittersweet excitement, when I met my next-door neighbor and found out that her little girl was also getting ready for her first open-heart surgery.

Coincidence? Divine intervention? Fate? All of the above, if you ask me!

While our meeting was definitely by chance, I know in my heart that the reason was intentional.

Both of our daughters were born with a congenital heart disease (CHD) and we needed each other; our girls did too.

Before we met, I often felt like I was the only parent I knew in real life who was trying to make important decisions for a medically fragile baby. Most of my friends had seemingly healthy pregnancies and children who were thriving, meanwhile, I was digging deep to stay hopeful as my daughter recovered from invasive, back-to-back open-heart surgeries.

The fact of the matter is that CHDs are the most common birth defect; a lot of children have them and live long, happy lives. But when it’s your child, yours, who is born immediately fighting for their life, the fear and anxiety are at a different level and their experiences — and ours as parents — are life-changing.

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Watching our daughters interact has warmed our hearts, especially because the bond they have with CHD is so unique. We have taken comfort in knowing they will always have each other to relate to in a special way. Their friendship seemed to form almost instantaneously and in the midst of it all, we were deeply inspired to write a children’s book based on their friendships and their CHDs.

So in March 2020 when COVID-19 forced the closure of everyday life, we found ourselves with dare I say a “tad more time” despite being working moms. Although we had already started writing and creating our children’s book a year or so before, the pandemic gave us more of a reason to share it with the world.

In April 2021 we self-published “Rainbows & Storms,” as a tribute to our daughters, Nylah Amor and Layla Rae.

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Our illustrations were created to mimic how our precious daughters look in real life — beautiful brown skin and curly hair. The story includes symbolism that heart warriors (a common term used to describe children battling CHDs) can relate to including “zipper scars on their chest,” the heart shape and a mixture of rainbows and storms that are indicative of how many CHD journeys are.

We wrote “Rainbows & Storms” to show how diverse CHDs are and that they affect children from all backgrounds. The message of the book is simple but powerful, and our hope is that it can help teach children how to be there for their friends throughout life’s triumphs and tragedies.

We want to get “Rainbows & Storms” in as many little hands and hearts as possible, because we believe in the power of community, the importance of helping each other and the inspiration that resilient children can offer to our world.

Sharing our daughters’ medical journeys has translated into us also becoming great friends who continue to be inspired by the CHD community. We know that we have a responsibility to give back hope to the other families of children like ours who are born striving to survive. Since becoming “heart mama” besties, Jennifer and I have teamed up on various CHD fundraisers that have benefitted individual children and families, and we have also held donation drives for cardiac patients and parents at Children’s Hospital Los Angeles. We are two heart mamas on a lifelong mission to lend our support to others in honor of our brave and beautiful little girls.

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As we slowly emerge from the pandemic, I still write a lot both professionally and personally and I know I will continue to find inspiration for my stories from my own children, and the others who are on rare medical journeys of their own. I’ve witnessed firsthand the countless storms of life, but I am grateful that now I am able to focus a little more on the rainbows that come in the form of unexpected, lifelong friendships.

“Rainbows & Storms” is available on Amazon.com. During the month of September, 100% of book sales proceeds will benefit the nonprofit, Conquering CHD.

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