Congenital heart disease. Heart conditions. Heart defects. You may have heard of these words. These words are curse words to any pregnant mom. These are empty words for those who can turn a blind eye, but they are loaded words to anyone who has been there— any caregiver who has heard those words spoken about their child or their loved one.
Those who know… Those who have been there… Those who have loved someone that was touched by congenital heart disease know that there is a whole other world existing within this big one— the “heart” world.
It’s a world full of conditions and arrhythmias and pressures and loaded terms like “stenosis” that can knock the wind out of any parent.
It’s a world where newborn babies are born purple and you hear words like “heart” and “surgery” and “emergency”. It’s a world of specialists, of hospitals, of appointments, and medical jargon. A world where parents kiss their children and pray with everything they have as anesthesiologists wheel them off to an operating room. It’s a world of tubes, of oxygen, of lines, and of monitors. It’s a world full of rubbery hospital recliners and industrial coffee. It’s a world full of silent nods and sighs exchanged in hospital hallways between fellow parents who know all too well what the other one is experiencing. It’s a world full of rounds, and living out of a hospital, and making friends with medical staff. It’s a world where “going home” means “until next time”– next surgery, next appointment, next virus, or next infection.
It’s a world full of scars that tell stories. It’s a world full of antibiotics and diuretics and blood thinners and medicines that relieve the pressure and work of a poorly functioning heart. It’ s a world of feeding tubes, of lifelong cardiology appointments, and a rising fear with every ache or chest pain. It’s a world full of medical bills and phone calls to insurance companies. It’s a world full of purple lips and kids who are running around short of breath.
And sometimes, it’s a world full of sadness, as parents watch their children’s heart rate flatline or they watch them stop breathing. As sleepless nights are had, because the monitors won’t stop beeping long enough to tune them out. It’s a world full of sadness, as parents get the news that “things don’t look good” or that their child’s heart is not functioning as it should. It’s a world of last ditch medicines, forms of treatments, medical trials and last chances to give their child one more day, one more shot for that little heart to work just right. It’s a world of transplant lists, of pacemakers put into newborns, of little ones having withdrawals from narcotics, of feeding intolerances, and poorly functioning organ systems.
It’s a world full of children that die far, far before their time, in the arms of their parents as they sob and they mourn and they curse the giant that is congenital heart disease.
…But sometimes it’s a world full of miracles.
A world full of children who beat the odds.
A world full of little ones running around with scars on their chest and smiles on their faces.
A world full of children who are given a second chance at life with someone else’s heart beating within them.
A world full of adults, who were once those children, who are starting families, and giving life, and pouring every ounce of love possible out of their mended heart.
There are miracles in this world.
I never understood the need for a medical miracle. Frankly, I never even understood medical causes. I never understood the need for cures. I never understood the need for awareness or the need for funding for more research. I lived my own life, and my life was untouched by the world of chronic illness.
And then on April 10, 2014, this world and I crashed into each other as my newborn son was life flighted for emergency open heart surgery at only sixteen hours old.
We were told he would not make it countless times on his first day of life. But you know what? Because of the people who have dedicated their lives to research, and the people who have stuck their necks out there and raised awareness and raised funds, and the advancements that have been done in the world of congenital heart disease as a result, my son lived that day.
I was thankful for those who had raised awareness in the past, and I was thankful for all of those who had donated for the cause of research, and I was thankful that we were some of the lucky ones— the ones whose child made it.
It wasn’t until Charlie’s death six and a half months later that I realized… There is more work to be done.
We need people. We need funds. We need research.
We need another “Charlie’s” story to be different— it can include them seeing their first birthday, going off to kindergarten, graduating high school, getting married, and having babies of their own… I want that for other parents, because I will forever live with the ache of all that I have missed with Charlie.
I want funds, and I want research because I don’t want this world to keep losing these little ones with big, broken hearts.
There is more work to be done, and you can help.
You can give someone a miracle.
Help by raising awareness and donating to The Children’s Heart Foundation, one of the many organizations that is doing their best to bring advancements in research to give little hearts the best chance.
Little hearts matter.