I still remember my 20-week ultrasound like it was yesterday. My husband and I were so excited to find out the gender of our baby. I knew that it was the ultrasound where they also check to make sure the baby has grown and such. However, we didn’t think much of it because we thought everything would be fine, and things like this didn’t happen to us. We thought this was something you see on TV or that happens to someone you don’t know. Honestly, before this day, we didn’t really know much about heart defects.

During the ultrasound a pediatric cardiologist came into the room and asked us if anyone in our family had a hole in their heart. At that second, my own heart stopped. I was wondering, why is he asking us this? Why is he in my room in the first place? What’s going with our baby? The baby that we tried for so long to have…

After the grueling two-hour ultrasound, my husband and I were asked to wait in a consultation room. At that moment, we knew something was definitely wrong. The doctor came in a told us the news. “Your baby will be born with a congenital heart defect. She has Tetrology of Fallot. She will have a rough first year and will require surgery right after birth and open heart surgery in the first year of life in order to repair her heart.” That was the beginning of our journey with congenital heart defects.

Once it all settled in and we came to terms with the facts, we realized how lucky we are to live in Houston, Texas, which has one of the best hospitals and great doctors and surgeons for congenital heart defects. Others, however, are not so lucky. I met people in the hospital that had left everything to come to Houston to give their child a chance at life. Some people had no one to lean on for support, others had other children that they had to leave behind and some people just had hope that everything would be OK.

Since I was lucky enough to have an amazing support system, I tried to lend myself to others to be there for them in their time of need. I wanted them to know I have been there, and I know how it feels. Whether it was the young mom all alone in the corner crying herself to sleep (yes, we would sleep in the waiting room for nights along with other parents), or the grandfather that would love to talk all day every day, just to get his mind off of it. I knew that it was my duty as a mother and as a human being to lend a hand. I would bring lunch or coffee one day or be by the bedside for someone who had to go home for the weekend to be with other children and just wanted someone to be there for her baby. I would smile and sing to her baby and text her pictures of her baby letting her know she was OK.

I have to say that I am blessed to have had good insurance to help us with the expenses and a great hospital team. However, this really made me think. What about the babies that are born in impoverished countries? What about them and their families? What do they do? It’s not fair for those innocent souls to not have a chance at life because they are not fortunate enough to live in the U.S. and do not have enough money for care. It’s not their fault. Their parents should not have to suffer, seeing their beautiful new baby and knowing that they may die and suffer in the process, just because they don’t have the means.

I would not in a million years ever want to imagine that for anyone. I decided to do some research because I wanted to donate and help other families who are going through this. That is when I came across the International Children’s Heart Foundation. I was so happy to find that this organization exists and that hundreds of babies and children are given a chance at life because of this amazing organization. I am happy to help this organization, and hopefully one day, I can contribute more. Every time I get a newsletter in the mail with pictures of babies and children that this organization has saved, I can’t help but smile and cry at the same time. They look so happy and alive.

Thank you very much to International Children’s Heart Foundation for giving these children and families a chance. You are truly amazing!

ICHF ambassadors help support and grow the mission of the organization, which is to bring together skills, knowledge and technology to cure and care for children with congenital heart disease in developing nations around the world.

Alicia is a CHD patient herself

Pediatric cardiothoracic surgery physician assistant Alicia Nicole Wilmoth is one of those rare and special ambassadors who is both a patient and a provider for ICHF.

The 35-year-old hailing from Akron and now residing in Cincinnati, Ohio, was diagnosed with unbalanced atrioventricular canal, or left-sided dominance, heterotaxy and pulmonary atresia, which is a congenital heart disease that prevents the pulmonary valve from properly forming.

She’s had to receive several forms of medical treatment for these conditions, including a Blalock-Taussig shunt, a Glenn shunt, and a Fontan procedure, and multiple heart catheterizations for right pulmonary artery stent placement and coiling.

Even with diseases like this that can slow you down in life, Alicia has always been determined to live life to the fullest extent and not let her heart conditions knock her down.

“I think as someone with CHD, you face mortality head on, and it can either break you or strengthen you,” she said. “I try to face it with a positive attitude and with the realization that I, like everyone else, am the only one who holds the key to my happiness.”

A passion for raising CHD awareness

Alicia offers her opinion on the most important thing that people should understand about CHD. It worries her that people don’t fully understand the meaning of congenital, a battle that takes place from life to death.

“CHD is not something that can be fixed, but rather, it is a life-long issue that we face. It is more prevalent than any other pediatric disease,” she said. “When people are shocked to hear ‘congenital heart disease’ and cry as they do for other serious illnesses, we’ll know we’ve made a difference then.”

In an era where there are more adults with CHD than children, ICHF is proud to have the support of ambassadors like Alicia. If you would like to become an ambassador, contact the team at ICHF to find out how. ICHF won’t give up the fight until the need for ICHF is obsolete.