February is Heart Awareness Month
“No hay nadie que ame el dolor mismo, que lo busque y quiera tenerlo, simplemente porque es dolor ”
On the last day of CHD Awareness Week, I have been thinking about what CHD Awareness means and why it is so important. To explain the importance of CHD, I must go back to the day I learned there was something wrong with my son’s heart.
This time around, I took a different path than I did with my first child. Instead of reading What to Expect When You’re Expecting, I read What to Expect: Eating Well When You’re Expecting. I wasn’t too worried about things I feared the first time around with this pregnancy, after a successful pregnancy and delivery at 37 weeks, five days gestation. I met with my OB/GYN on the regular schedule and completed routine tests, like checking for gestational diabetes or if the baby had spina bifida or chromosomal abnormality. The second pregnancy was as routine as the first one. Although some of the ailments I experienced were different, they were typical, nonetheless. In my mind, I was ready for this baby boy to arrive. And arrive he did.
My water broke with what felt like a vicious karate kick to my lower abdomen around 3:00 a.m. By 5:08 a.m. I had a bouncing baby boy! My son and I went through the post-delivery shuffle moving from Labor & Delivery to the Mother/baby area. Mother/baby is where healthy moms and babies begin their recovery and prepare for discharge in approximately 72 hours. My sweet boy took the infamous newborn photos and began a series of routine newborn screening tests.
I didn’t know, don’t recall reading, or anyone telling me about the most common birth defect. In the United States, this happens to be congenital heart defects or congenital heart disease (CHD). Nearly eight short hours before I was scheduled to be discharged, a nurse alerted me that my baby boy failed the pulse oximetry test. She told me it appears he may have a “mild” heart murmur. To be safe, they wanted to take him to the Neonatal Intensive Care Unit (NICU) to monitor him. A pediatric cardiologist will examine him, and we should be going home in no time.
The Alabama Department of Health implemented Critical Congenital Heart Disease (CCHD) screening in mid-2012 (after my first child was born). This screening targets seven specific anomalies classified as CCHD. It turned out, we did not get home in a few hours. Instead, I received a call in my hospital room explaining that the cardiologist wanted to meet with me. The diagnosis was Total Anomalous Pulmonary Venous Return (TAPVR). This diagnosis meant he would be flown to Children’s of Alabama (Pediatric & Congenital Heart Center of Alabama) immediately for open-heart surgery. It wasn’t a heart murmur, it was a diagnosis that was 100% fatal if left untreated. Although my husband was by my side, I found myself in a place of devastation, anger, and helplessness; but mostly, I felt ALONE!
I was oblivious to the other ≈ 40,000 moms who found out their babies had a CHD or the ≈ 10,000 moms whose child would require surgery to correct the defect. Some of them requiring multiple surgeries. I felt helpless because I didn’t know there were resources available to help my son and my family. After my time at Children’s of Alabama and many conversations with my OB/GYN, I learned that heart defects are the most common birth defects, and most heart defects have no known cause. I didn’t do anything to cause this, but I can help others who may experience it.
CHD Awareness is most important because underfunded programs aid children in living long, healthy lives. According to the Center for Disease Control (CDC), in a 2019 study, it is estimated that each year nearly 504 babies in the United States are born with TAPVR. That equates to 1 in every 7,809 births. My son was diagnosed with a rare CHD, has had one open-heart surgery, participated in a three-year follow-up program, and will see a cardiologist for the rest of his life. However, when you see him, you would have no idea. To anyone else, he is a typical, high-spirited little boy that bears his superhero scar with pride.
As this awareness week comes to a close, let’s do all we can to increase awareness and support for the many programs that provide pediatric cardiac care to the many babies born with CHD.
Consider donating to the Pediatric & Congenital Heart Center of Alabama.
To all of the heart warriors, we see you, and we love you!
Publish his glorious deeds among the nations. Tell everyone about the amazing things he does." ~ Psalms 96:3
Alicia
