Tetralogy of Fallot Doesn’t Define Me: Emy’s Story

Patient with heart condition receives life-saving care at Texas Children’s

Emily
Texas Children's Hospital

A newborn’s diagnosis

Jamie and Jeff beamed as they held their newborn daughter, Emerson (Emy), who appeared to be as healthy as she could be. However, within an hour after her birth, her pediatrician, Dr. Joeffrey Wolens, detected a heart murmur. The murmur persisted through the second day, and Emy had an echocardiogram. Soon after, a cardiologist and a cardiology fellow sat down to talk with the family.  

Emy was diagnosed with a rare and complex heart condition called Tetralogy of Fallot, which is caused by a number of heart defects that are present at birth. These defects affect the structure of the heart and make it harder for the blood to flow out of the right side of the heart.

“Emy’s cardiologist told us that she’d need open-heart surgery when she was 1 year-old,” Jamie said. “While that was terrifying enough, until the surgery occurred, we had to keep her from having blue baby syndrome episodes.” These episodes are associated with tetralogy of Fallot and occur when the blood is unable to carry oxygen around the body. They can make it difficult to breathe, cause seizures and even loss of consciousness. “To avoid these episodes, we had to keep Emy healthy, which meant keeping our sweet baby away from everyone except for our closest family, which was so difficult,” Jamie said. “Jeff and I even had to try to keep her from crying.”

Thankfully, Jamie and Jeff’s sacrifices and precautions kept Emy from experiencing any blue baby episodes, and this period even brought rays of hope. In fact, she was big enough and healthy enough to have surgery early at 9 months old — three months earlier than anticipated.

“I will never forget one particular appointment we had at Texas Children’s Heart Center,” Jamie explained. “Emy was having an echocardiogram, and the technician who performed the test told us, ‘There is so much to be hopeful for. I had what your daughter has, and here I am.’ I will never forget that moment, and it gave us so much comfort during this scary time to know that Emy could grow and live a long life.”

An outpouring of support

Finally, the day of Emy’s open-heart surgery at Texas Children’s arrived. “The whole surgical team was so professional and kind,” Jamie said.

“We were so blessed to have support coming from everywhere,” Jamie said. “Everyone came forward with their best wishes. We received love and support from our family, close friends and co-workers, well wishes from other cardiac patient parents, prayers from a lovely group of nuns and a variety of gifts from people, including Mediterranean evil eyes for protection. It was incredible, and we still have those gifts.”

Emy’s surgery was successful, and the Texas Children’s Heart Center team explained to Jamie and Jeff that Emy’s healing and recovery would be a process that would take some time.

Emy grows into her own

As Emy got older, Jamie found that it was difficult to let her just be a normal kid in the beginning. “For the first few years, of course, it was apparent that she had had surgery. We were worried others would think, ‘Oh, she’s had a tough life’,” Jamie explained. “But then as she got older, we realized that wasn’t what we wanted the narrative to be. Instead of focusing on how tough it is and having to cope, we wanted to emphasize that this is just a part of who our daughter is — her congenital heart defect and her surgery are not her identity.”

Emy began dancing at a young age and loved it. Now a bright and vivacious 15-year-old, Emy says, “I became very open and honest about my condition. Even when I was dancing, others would see the scar, and I was completely fine with telling them that I had had open-heart surgery.”

When she reached 7th grade, she wanted to play volleyball.  Because Jamie was still concerned about her health being compromised, Emy waited one more year and started volleyball in the 8th grade.  

But her inner strength, resiliency and fighting spirit — qualities she’s shown since infancy — shone through. “She got into club volleyball the summer before 9th grade and put her all into it,” Jamie said. “I couldn’t have been more proud of her. She then earned a spot on her school team and was awarded MVP Volleyball Player of the Year. Her resolve never ceases to amaze me.”

In addition to being a spectacular athlete, Emy has a penchant for languages. “She’s picked up Spanish incredibly quickly and received the award for outstanding Hebrew student,” Jamie said proudly.

Hearts full of hope

Emy still receives regular check-ups at Texas Children’s. “Emy is a wonderful young lady,” said Associate Chief of Pediatric Cardiology, Dr. Carolyn A. Altman. “Her willingness to be open about her condition and share her story will greatly help patients with tetralogy of Fallot and other heart-related conditions and their families.”

When asked about how she feels going into her check-ups and heart stress tests, Emy said, “I worry about “the now” — I just want to be in and out of there. I just want it to be done. I listen to music to take my mind off things, which gives me a sense of tranquility and distraction. I’m also a huge Taylor Swift fan and have attended three of her concerts including the one at NRG Stadium this April.”

Advice for families

Emy has two younger siblings, and the family copes through humor and spending time together.

Jamie and Jeff recommend that families experiencing a similar situation also find support for siblings, as they experience concern and anxiety as well.   They also encourage parents to be vulnerable and accept support from not only friends and family, but colleagues and neighbors as well.

Jamie had additional advice for parents with children facing a similar diagnosis. “It’s okay to ask your physician questions. Send emails, ask if it’s all right to record your appointment or have close family in the room with you to help with taking notes. All of Emy’s physicians and providers at Texas Children’s have been incredible, and we couldn’t be more grateful. The prevailing sense was that there is always hope, and to hear that is a beautiful thing.”

Emy shared her own advice for patients with heart conditions. “Own it, embrace it, and don’t be afraid to share what’s happening,” Emy explained. “It’s a part of who I am, but it doesn’t define me.”

 

Source: Texas Children's Hospital Blog

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