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Proud to be called a Heart Mom

February 10, 2012

Written by Erin Johnston.

Recently I contacted Orlando's Mayor, Buddy Dyer, and asked him to write a proclamation that February 7-14th would officially be Congenital Heart Defects Awareness Week in Orlando, FL.

If you had told me years ago that I would be writing to a Mayor I would have laughed. Before I became a mother I had never heard of congenital heart defects or knew the importance they would play in my life.

In August of 2010 I was 20 weeks pregnant. I had my very exciting gender ultrasound and found out that I was having another boy. I was beyond the moon. The next morning my world came crashing down around me. My doctor called me and told me that my baby had birth defects with his hands and legs. Through further testing I was told that my son had a very serious chromosome disorder called Partial Trisomy 9. I was distraught; the very outdated material I was given about this condition painted a very negative light and gave me little hope to have a healthy baby.

During this time I was also told that it appeared that my son would be born with a very serious heart condition called, hypoplastic left heart syndrome (HLHS). Due to my son's already serious condition he most likely would not make it through the many surgeries he would need. I was given the option to have a late abortion, which I personally could not go through with. However, I did know that the odds were stacked against my son. I began to plan my son's funeral.

Throughout the next 4 months. I had many fetal cardiology appointments to determine if the left side of my son's heart was, in fact, not growing anymore. I prayed and begged for his heart to magically grow. At the time it seemed silly, but during my last fetal cardiology appointment I was told that, amazingly, my son would not be born with this congenital heart defect and that his heart had in fact grown. I was already a very proud mother.

When Kaleb was born on December 27, 2010, he was not breathing. The team in the operating room was able to get him to start breathing and after that there was a slew of tests, new diagnoses, specialists assigned to my son's care, and many questions. During his stay in the neonatal intensive care unit (NICU), we were informed that he was born with some heart defects, however not as serious as the previous possibility of HLHS. My son was born with a hole in his heart, an open valve that should not have been open, and he was missing his right superior vena cava.

The superior vena cava is the main vein in your heart that carries blood from the body to the heart. Kaleb's heart has opened a vein that should have already closed, and that is what is used to pump the blood. After speaking with his cardiologist and researching, I found that the first two defects are somewhat common and could be easily fixed. However, a missing right superior vena cava is almost unheard of. My son's cardiologist has only found two documented cases of this happening anywhere in the past. It is unknown how this will affect his life because there is simply no research.

Since becoming a "heart mom" I have done everything possible to increase awareness of congenital heart defects, along with the many other conditions that he has. I wrote to the Mayor because awareness is needed in this area. It is estimated that 1 out of 100 births results in a heart defect; it is the most common birth defect and is the number one cause of birth defect related deaths worldwide. More research is needed to learn more about these conditions and how they might be prevented.

On February 3rd, I checked the mail just like I do every day. However on this day I found a large manila envelope from the Mayor's office. In that wonderful folder was a proclamation that had been signed by Mayor Buddy Dyer. I cannot describe to you the feelings that came over me. I cried for my son, my hard work, and the awareness that I would be able to bring to the community through this piece of paper. This was proof to me that I was on the right path and that I had taken a very painful time in my life and turned it into something positive.

Kaleb is in my life for a reason and I have been given an awesome opportunity to tell his story. Currently, Kaleb is doing very well. The hole in his heart has closed on it's own and the valve that was open and should not have been has closed. Kaleb has experienced more than I have in my 29 years of life. In just 13 short months he has been through 3 surgeries (not heart related), monthly EKG and echocardiograms on his heart, many medicines, doctor's appointments, a weeklong hospital stay, casts on his legs for 6 months, and several procedures. But, he always begins the day with a smile.

Kaleb is my hero in every sense of the word and I am proud to be called a Heart Mom.