Every year 40,000 infants in the United States are born with a congenital heart defect or CHD. According to the Center for Disease Control, congenital heart defects and heart disease are the leading cause of death in infants. Most babies born with a CHD will not need surgery, the CDC estimates 25% of these children will require intervention, medication or surgery.
I am a mother of a child who was born with a CHD and then developed additional disease to his heart as he grew. My son will be part of the 25% that will require open heart surgery.
My child has a form of heart disease, mitral valve stenosis, that is typically only seen in adults over the age of 60 or individuals that have suffered from Rheumatic Fever. He is neither of those two.
Doctors noticed a murmur in my son’s heart as an infant. Two small holes, on in his ventricle and another in his atrium, were evident via echocardiogram. He was also born with pulmonary hypertension.
By the time he was six months old, the holes in his heart had closed. Pulmonary hypertension he experienced early on resolved. Yet, he still had a heart murmur.
After two years of a perplexing heart murmur, our Genetics doctor ordered an echocardiogram. I remember the day vividly because my son was acting wild. At that time I had no reason to believe that anything was wrong.
As my son laid on my chest during the ultrasound, a looked over at the tech and said, “Please don’t make me a heart mom today. My son already has too many health problems.”
I’ll never forget the frozen and pale look on the face of the technician. She looked concerned and studied the images intently. Her voice was quiet, and she said, “You are a heart mom.”
My stomach dropped to my feet. I asked the tech some questions, but she couldn’t tell me anything. After the test was complete, she had us wait for a cardiologist to come to the room.
When the cardiologist came to the room, he introduced himself and drew us a picture. He explained my son’s valves had calcification that created stiffness when they moved. My son’s valves didn’t open all the way, and it caused increased pressure in his heart.
Our cardiologist told us this disease causes shortness of breath, pulmonary hypertension, fatigue, and if not treated leads to the heart to fail.
That was the day I became a heart mom.
Due to the age of my son at the time, doctors wanted to wait to operate on his heart. My son received his diagnosis at age three, and his heart was too small for surgeons to repair the valve. If we had surgery then, he would have needed a mechanical valve.
We agreed to follow our cardiologist’s plan for monitoring his heart. The idea was to watch his heart every 3-6 months. Our goal was to get him to the edge of heart failure before surgeons operated.
At the time I was grateful that surgery was postponed. However, I didn’t realize what it meant to push a heart to the edge of failure, and how it would impact my son.
For the first year, my son seemed to do well. We noted increased work of breathing in the early days. Thankfully we had an experienced pulmonologist that treated kids with heart and lung diseases. He started my son on an “Asthma” plan even though my son’s asthma didn’t present typically.
The medication worked, and my son was able to do typical toddler activities.
We had a plan of action and protocol in place for how to manage emergencies. When my son was hospitalized, doctors knew to monitor his heart, respiration and oxygenation levels. He stayed stable for 18 months.By winter 2017, we noticed he had a harder time keeping up at preschool. After walking down a long hallway, he walked up to me with bright blue lips. I had to rush him to the nurse’s office, give him his inhaler, and tried to calm his breathing down.
My heart began to break knowing my son was struggling so hard to live.
He no longer had the energy to run. When we tried to attend birthday parties with bounce houses or trampolines, he couldn’t jump for more than 30 seconds without needing a break.
I worked with his doctors to find a way to conserve his energy. Our physical medicine doctor ordered a wheelchair for him. At four years old, my son became wheelchair bound. He could walk short distances, but he relied on his chair for anything more than 100 feet.
My agony increased knowing that his continued deterioration was stealing his joy.
By July 2017, we noticed his work of breathing had increased. Walking up a flight of stairs became impossible for our son. Most days he asked us to carry him up the stairs. As he grew the stress on our bodies increased, and we started working with his social workers to install a lift in our home.
His skin went from a healthy shade of peach to a pale white. Multiple times a day he would be so short of breath that his lips turned blue, and he would need emergency treatment to restore his breathing.
More doctors were added to his team. His digestion deteriorated, he couldn’t gain weight, and he got a feeding tube. Sleep became impossible for him, and we began working with a sleep doctor.
As a result of his disease, it slowly stripped everything from him.
Today he is at the edge of heart failure. Most of his day is spent laying on a couch watching his Ipad. He has little to no energy to play, and he is unable to walk more than 50 feet without shortness of breath. Just last week he walked up 1/2 a flight of stairs, laid down, and begged my husband to carry him up the rest.
For almost three years, I have been watching my son lose his ability to breathe, eat, play, and enjoy life. Watching his decline has been the hardest thing I’ve experienced in my life.
There is light at the end of our tunnel now. In 4 weeks, my son will undergo his first open heart surgery to repair his valves. Based on the success of the operation, we will know how many more surgeries he will need. Doctors have told us to expect him requiring a minimum of two heart surgeries as a child.
As hard as it’s been to go through these past three years, surgeons will be able to repair his valve. He won’t need a mechanical valve, and he should be able to enjoy life again.
I’m grateful we have come to the end of this journey of pushing his heart to the edge.
Being a heart mom is excruciating. I have panic attacks, anxiety, and depression from managing his care. Witnessing my son’s health decline has been gut-wrenching. The number of times we’ve had to intervene to improve his breathing as resulted in both of us developing post-traumatic stress disorder.
Ultimately, the hardest part for me is knowing that there are 40,000 mothers each year that become a heart mom like me. We need better funding, research, and treatment for heart disease in children.
I want to see a day where no child has live with heart disease.
No mother deserves this agony.
No child deserves this pain.