In 1963, President Lyndon B. Johnson signed a proclamation stating “I, Lyndon B. Johnson, President of the United States of America, do hereby proclaim the month of February 1964 as American Heart Month.” That section of the proclamation appears near the end. It’s the beginning that takes the wind out of me: “Whereas diseases of the heart and the circulatory system are responsible for over one-half the deaths occurring annually . . .”
Last February, we celebrated American Hearth Month in Children’s of Alabama and I was unsure what half of that aging statistic our son would be a part of. After exploratory blood work, our doctors found that our son’s kidneys were failing and that his heart medications were toxifying in his system. One month after adding several heart medications to his daily regimen, they became part of his decline. He was taken off his heart medication and the team focused on rehydration. Unfortunately, this course of action led to the scariest phone call of our lives. At 4:30 in the morning, we received a call from one of the CVICU’s nurse practitioners stating that Parker was in cardiac arrest. She had completed a series of chest compressions and he was now intubated and stable. Over the next few days we watched our son wither away. He lost four pounds and our three month old was well below his birth weight.
Parker was three months removed from open heart surgery and one month out from a cause-less battle with heart failure, and it seemed so odd that those instances were easier on us than this battle. We spent all of February in the hospital. My husband and I were attempting to work full time and our family was struggling to keep it together.
It was gut-wrenching to realize that American Heart Month had existed for my entire 26 years of life and I never once bothered to care about it before February, 2017. I dismissed the idea of raising awareness because I never fully understood its purpose. It took my child being on heavy doses of sedatives for weeks on end for me to understand the purpose of raising awareness.
I thought back to my 18-week anatomy scan when I walked in and said, “I am here for my anatomy scan.” The ultrasound tech responded, “Good for you; most people call it the ‘gender scan.’” I was proud of myself for caring about the “big” stuff. I asked questions throughout the scan. I asked the questions that ruled out many birth defects or genetic disorders. We were clear. The only thing that was odd was that they couldn’t see all four chambers of our recently identified baby boy’s heart. It was chalked up to the way he was turned. It was determined that we would look at his heart again at 26 weeks. So, at 26 weeks we checked, and we were cleared.
Looking back on that series of events is what makes awareness important. At 18 weeks, I could have known that something was wrong. I could have been an advocate for my child. I might have been able to prepare my family for the traumatic events that would take place once our son was born. I feel so ignorant in my confidence of thinking I was in control of that anatomy scan.
I thought heart problems were for adults. I thought it was a disease that suddenly took the lives of my friends’ parents without rhyme or reason. I did not know congenital heart defects also impact 1 in 100 children. And I didn’t know we could be that one. Heart disease is much uglier than I ever knew.
Once our son’s condition was identified and we began our heart journey, we learned of more heart heroes among us. Our colleagues knew someone else that had a child with a congenital heart defect (CHD). Our friends told us of their siblings with heart defects. And one of our closest Birmingham friends shared his journey with us as an adult living with CHD. Our heart community grew quickly. It was a community I never knew existed and never intended to be a part of.
I would describe the heart community as welcoming. There is an instant connection as you talk about heart transplants, early intervention services, cardiologists, and the nuances of your heart hero’s unique defect. While this community embraces you, the world you knew before slowly begins to fade. You begin to grow away from family members who don’t know what to say or how to express concern. You lose friends as they share complaints of first-world problems while you try to manage a job and an intense series of follow up appointments that your child’s life depends upon. You also lose your sanity as you try to balance caution while ensuring your child experiences a fulfilling life outside of a hospital room.
As the proclamation states, “It is essential to the health and well-being of our nation that our citizens be made aware of the medical, social, and economic aspects of the problem of cardiovascular diseases, and the measures being taken to combat them.” I implore you to question, to persist, and to learn about heart disease.
If you know someone who is pregnant, I encourage you to share our story with them. Ensure they question the validity of an anatomy scan. I encourage you to become aware and advocate for the heart hero you know or have yet to meet. I ask you to learn about heart disease — to prevent it, to support those fighting it, and to be the shoulder to cry on for the distraught parent needing help. Lastly, as you celebrate Valentine’s Day or listlessly ignore its existence this February, take a moment to think of the heart community. Think about the heart community as they reflect on love lost, a love they might be fighting for, or a love that they will never know.
This post is in tribute to the late Traci Morgan, the amazing nurse practitioner who saved our son’s life on that dreary February morning. You will always be missed and hold a special place in each of our hearts.