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Follow up on Emma: A few years later

February 14, 2014

You might remember Emma from a few years ago when we of courageously battling congenital heart disease from the moment she was born. Yet, despite the many challenges that Emma’s family had faced in her early childhood years, they remained strong, and a true inspiration to the many other families in similar situations. Their goal was to touch as many families as they could, and to give back to Arnold Palmer Hospital, largely through their involvement with Children’s Miracle Network Hospitals. These are both goals that they continue to exceed, even now as Emma is a thriving and healthy young lady.

We recently had the opportunity to sit down with Shannon, Emma’s mom, to see how Emma was doing post-surgeries, and to learn why it was important to their family to continue to support their community at Arnold Palmer Hospital. Here’s what she had to say.

Last time we shared Emma’s story, she was seven years old. How is she doing now?

Well, Emma is now nine years old. She is quite the busy body. She is currently taking ballet and tap classes, along with tumbling coming up this summer. Our son, Brandon, plays a few sports, and Emma has been named the honorary team cheerleader. She loves it! The kids were rezoned to a different school this year, and while there have been some challenges, the adjustment has gone well and Emma is making a lot of new friends!

Emma is turning into an amazing young lady. She is no longer a little girl. I sometimes find myself in awe of her and the conversations we have each day. It is surreal that nine years has flown by so fast!

Sometimes, kids with congenital heart disease tend to lag behind their peers developmentally. But Emma is on track with the other kids her age, even though she jokes about being one of the tiniest girls in her class. Her brother, a little over two years younger than Emma, finds it funny that he is the same weight and height as his sister. Overall, school has been going well, although Emma does have some struggles with reading comprehension. Through some research we found that this can be related to how Emma’s blood and oxygen circulation were before surgical interventions. We have been blessed with a great team of teachers and support staff that work with Emma every day to help her stay on course.

Would you ever know that Emma has had four major heart surgeries?

Looking at Emma today, you would never know she had such a rough few years, including multiple heart surgeries. Emma is so proud of her scar and doesn’t hide it from anyone. She wears her scar like a badge of honor and knows that nothing can hold her back!

Are visits still required to The Heart Center at Arnold Palmer Hospital?

Emma will be a patient of The Heart Center for the rest of her life. Even though Arnold Palmer Hospital is dedicated to children, Emma’s diagnosis is congenital, meaning that she will always be cared for by the staff at Arnold Palmer Hospital. Knowing this, we are at great ease with her plan of care leading into adulthood.

What does Emma’s future look like?

Emma sees Dr. desJardins, her pediatric cardiologist, once a year for check-ups. This is a big deal in the cardiac world! We estimate that Emma will need a corrective procedure within the next five to ten years, which is normal among kids with Emma’s type of congenital heart defects. However, based on technological advancements, we know that Emma’s recovery could be minimal compared to the challenges she has faced in the past. We are certain that Emma has a beautiful and bright future ahead!

How have your family’s relationships with physicians/staff members at Arnold Palmer Hospital grown or changed?

When we became an Arnold Palmer Hospital family, I truly had no idea what to expect of the staff and our relationships in the future. But, the cardiac team has become an extension of our family over the years. Some of Emma’s doctors, including her surgeon, Dr. DeCampli, attend our annual golf tournament. I’ve even joked to them that they will be attending Emma’s graduation and wedding, too! Over the years, some of the staff has left to pursue other opportunities, and thanks to social media, we are able to stay in touch. We love the ability to connect online so that those who have cared for Emma can watch her grow through pictures. I cannot imagine a life without our family at Arnold Palmer Hospital, as they have given us so much more than we can ever give back.

What does it mean to your family to continue to support the hospital through Children’s Miracle Network Hospitals?

From the moment Emma was born, the Children’s Miracle Network Hospitals (CMNH) has played a role in her care. At roughly five hours old, Emma was picked up from her birth hospital by an ambulance funded by CMNH to be transported to Arnold Palmer Hospital. Through all of Emma’s surgeries, the CMNH staff has been there to support us in so many ways. Because of this, our family has vowed to be a part of CMNH for as long as we possibly can. We have participated in countless events, sharing Emma’s story to help promote the need for funding for Arnold Palmer Hospital and the children they care for each day. I wish the community knew more about CMNH and how they support Arnold Palmer Hospital. The two organizations are a phenomenal team and do so much to care for the children and families in our community.

How does your family continue to support the hospital and CMNH?

As a college student at the University of Florida, my husband, Chuck, had participated in an annual charity golf tournament that raised funds for CMNH. Of course, Chuck had no idea that those funds would be used to take care of his own daughter one day! When we became a CMNH family, we decided that we needed to find a way to give back, so we started our own golf tournament.

In fact, we are getting ready to host our 9th Annual Emma’s Miracle Golf Invitational, benefiting CMNH and Arnold Palmer Hospital. The event itself is put together by Chuck and I, with the support of family and friends. Putting the event together is a lot of work for two people, but we wouldn’t change it for anything. Most of the participants are family and friends who have been with us from the beginning. They have seen the rough road Emma has traveled to get to where she is today. We don’t raise hundreds of thousands of dollars, but we know that we do raise makes a difference. I like to say that every penny counts when it goes to caring for a child.

Has Emma expressed interest in giving back herself?

Absolutely. Emma and even our son Brandon have been a part of everything we do. Whether it’s telling her story at a CMNH event or making toy donations to the playrooms at Arnold Palmer Hospital, Emma is always involved every step of the way. This year, Emma has most recently decided that she wants to make bracelets and paintings to be sold at our upcoming golf tournament to raise money.

Chuck and I want to raise our children to give back and pay it forward to those in need. Keeping Emma and Brandon involved with CMNH and Arnold Palmer Hospital has shown them that helping others, especially children like themselves, truly warms their hearts.

Many times, families feel that Arnold Palmer Hospital becomes their second home after their child has received treatment here for days, weeks, or months on end. And sometimes, the transition out of the hospital and/or treatment back into normal life can be challenging. What advice would you give to families who feel the desire to continue to stay connected and involved with the hospital, even after their child has received care here?

I would encourage families to stay in touch with their Arnold Palmer Hospital family and visit when they are comfortable doing so. Each time we visited the staff that cared for Emma, they were more and more excited to see how well Emma was doing and how big Brandon was getting.

Families can also get involved with various charities that help support the hospital, too. Sharing Emma’s story was a great way for us to give back and spread awareness to our community. I encourage families to donate in any way they feel comfortable, whether it be a monetary donation, a fundraiser, or even gift giving. We like to donate gently used toys to the playrooms, new toys during the holidays for gift giving, and even new pajamas and socks for patients who do not want to wear a hospital gown.

There are endless ways of giving back and paying it forward to organizations like CMNH and Arnold Palmer Hospital. Big or small, your support to the children is greatly appreciated, not only by the kids, but by their family as well.