Incompatible with Nature
In 1984 I gave birth to my son, Marc, in Germany. I was assured by my obstetrician at all of my regularly appointments checkups there that my baby and I were fine. I still have the electronic print out of his fetal rate showing that his heart beat was strong, steady and … normal.
After my release from the hospital, my husband was told that an appointment had been made for us the following day at the University Clinic of Cologne Pediatric Heart Department. The doctors communicated with my husband who was German because I couldn’t understand the language. They weren’t sure if our son’s skin tone appeared a little off color and if so, was it because of me?
I’d had 9 months of positive prenatal tests, my baby had ten fingers, ten toes and the biggest almond shaped eyes I’d ever seen–he was perfect! I didn’t see the necessity of going to the appointment, but something in my gut told me to go. Maybe this was just the German way of doing things, and it was after all, only a checkup, the doctors had assured my husband.
Well, what happened that day at the checkup changed my life…forever. My son was diagnosed with Heterotaxy Syndrome, a very rare and complex birth defect whereby the internal organs are abnormally arranged within the abdominal and chest cavities and usually involves heart defects of varying types and severity. Rather than his heart having 4 chambers–he had only 2; one of the severest forms of this disease–basically he was born with only half of his heart.
Upon receiving this news I began screaming and crying, and it was then that I found out that the German chief cardiologist had a basic command of the English language: He cut off my tantrum: “Your son is so ill he can die at any moment. There is no surgery to save him. There is no hope. He was born, incompatible with nature.”
I struggled with that statement and still struggle with the horror of its sound to this day, but at the time I had to come to grips because day after day after day went by and Marc didn’t die and didn’t die and didn’t die and with each breath Marc took, my belief that I had to give God a hand in this miracle grew stronger and bigger and deeper and wider and more unwavering and more determined by the minute. And today my baby is 33 years old!
It’s been quite a journey and I feel that I owe it to myself, to Marc and to you to share some of what I’ve learned on this journey.
Speak up. Don’t let the white coat of a doctor scare you. In all medical situations, ask. Tell. Give voice to all of your concerns, don’t ever hold back and don’t care about what a doctor or nurse may think about you. It could be the difference between life and death.
Keep watch and ward.
If you are faced with having to deal with a loved one’s healthcare, take notes, be involved, be aware, don’t leave anything to chance.
Don’t Give Up: I want you to remember this: Only God counts the stars. It may seem that doctors are the closest thing on earth that we have to God–especially when we are faced with white knuckle medical situations–but I beg you, please give life a fighting chance in ALL circumstances. Let it be what motivates and inspires you and let there be no compromise regardless of the odds because death is forever.
Be courageous in your conviction and have conviction in your courageousness! And have hope, sometimes it seems that hope is all we really have and we’re going to need that ray of light that shines through to guide us when we bump into walls in the dark because bump into the walls we will. And most importantly… keep your faith: whatever it is that you call on for help and support. Faith will bring you to it. Faith produces what you believe: it is confidence in what we hope for and the belief in what we cannot see.
And that is the heart of the matter.
Here’s to life!