Note: There is a wide range of congenital heart defects. Some require only small repairs and some are extensive. I can only speak from my experience. My son has Hypoplastic Left Heart Syndrome (HLHS).
I have been in your shoes. I have sat in the chair opposite a cardiologist and wanted to throw up. I’ve tried desperately to remain calm while taking in devastating information. My unborn baby has a congenital heart defect. In a single instant, your world is changed forever.
“What do I do now? WAIT! Did that doctor REALLY suggest termination?! Okay, okay, he says there are options. Oh, options that will take more money than I can even imagine. Options that include multiple life-threatening surgeries and guaranteed extended hospital stays. What will I do with my other children while my heart baby is in the hospital? What will I do about work? Is palliative care more compassionate? No! I’ll fight like hell for my kid! Is that the right choice here? What are the rules? Are there rules? Will I ever hold my child? This isn’t what I signed up for!”
Then you hear the doctor ask, “Do you have any questions?”
“Huh? I’m sorry. I got none of that.”
That’s about when I burst into tears.
I remember that day like it happened yesterday. I’ve been where you are and I’m so sorry you have to experience this pain too. The thing I craved more than anything was a plan. I wanted to know how to prepare and what I could expect. If you’re anything like me you are googling like crazy as if just a little bit more information could change the diagnosis.
But nothing short of divine intervention will change the diagnosis. So where do you go from here?
Do Nothing
Seriously. I know it doesn’t seem right, but the first thing you need to do is…NOTHING. The doctor undoubtedly had a lot to say and you need a chance to digest the information. Unless you’re in active labor, no immediate decisions need to be made. Imagine a lit up Christmas tree, set on fire, flash frozen, and then sent through a wood chipper. That’s your brain. You simultaneously have too many thoughts and no thoughts at all. Don’t ask me how that’s possible, it just is.
Do. Nothing.
Go home. Cry your eyes out. Be angry. Be sad. Eat a LOT of carbs. Grieve the vision that has been lost.
Only when you have no more tears to cry and you’ve eaten all the junk food in the house are you ready to begin. So grab your big girl panties and put ’em on. If you think you don’t have any, get ready, because you are going to learn to sew!
Get A Second Opinion
Let’s get one thing straight. YOU ARE THE CLIENT. Hospitals need YOU. You (or hopefully your insurance) is going to pay MILLIONS for these services. If you live in a country with universal healthcare, be especially cautious. In these countries you are NOT the client, the government is. A universal healthcare system has little incentive to help children like ours. This not to say these countries never perform invasive procedures to save kids with complex congenital heart defects. But it is a fact that in Canada there are only two hospitals that do these surgeries. My friend from Nigeria was told they needed to terminate or proceed with palliative care. She said, “screw you” and moved to the States. As a result, her daughter has had 3 surgeries and is thriving today.
It is a fact that it would be a lot cheaper on the universal healthcare system to let your baby die.
If your doctor is not working for you, dump your hospital and care provider immediately. Don’t worry about what it costs, how you’ll get there, where you’ll stay or anything else. You can sort out the “how” after finding a doctor willing to give your baby a chance.
Some of the best Children’s Hospitals for Cardiology & Heart Surgery are:
- Texas Children’s Hospital – Houston, TX
- Duke Children’s Hospital and Health Center – Durham, NC
- Rady Children’s Hospital – San Diego, CA
- Nationwide Children’s Hospital – Columbus, OH
- Boston Children’s Hospital – Boston, MA
Write Out A Script
The first person I told about my son’s diagnosis was my mother. (Yes, I actually call her “mother”.) It was a train wreck. I told her from the start of the call that I didn’t know how to say anything correctly and I’d probably get everything confused. But she listened patiently as I fumbled through the diagnosis.
After I got home I wanted to tell my extended family. I carefully looked over the quickly scribbled notes I had taken while speaking with our doctor. I googled terms. I got a general understanding and then wrote it out as clearly as I could.
This is what I wrote.
Writing it down is for you, not for them. Your script doesn’t need to look anything like this. But let me tell you, writing this out made the biggest impact on my ability to talk about the problem without stumbling over my words.
If this script is something you plan to share with other people as I did, I would encourage you to include privacy instructions. Let them know if they are free to share or if you prefer them to keep it private.
Trust Your Ability to Learn
Whether you wanted it or not, you’ve been enrolled in Medical Terminology 101. I have a Masters degree and I’ll be honest, before my son was born, I couldn’t name the 4 chambers of the heart. In defense of my mother who homeschooled me, I’m absolutely positive this was covered in science class. And in defense of myself, it had never been relevant in 27 years.
Wherever you are starting from, you’re in good company! There’s no time like the present to learn. Ask every question that comes to mind. Seriously. Ask the doctor, nurse, tech, receptionist, anyone that will listen. Take notes on paper or your phone because after they spew out words that have no business being in the English language you can Google it to death after they leave the room.
At the 2 year mark a doctor asked what my medical background was. None. I have a degree in Piano Performance. I just pay attention and I want to learn.
If I can do this, you can do this!
Do the Next One Thing
I’m sure you’re still panicking. Sorry, there’s not really an off button for that.
How do you eat an elephant? One bite at a time. Just do the next one thing.
Maybe your next one thing is a good cry in the shower. Maybe it’s calling your OB to tell them you’re switching to a high risk facility. Have you written your script yet? Or called your mom?
“So do not worry about tomorrow; for tomorrow will worry about itself. Each day has enough trouble of its own." - Matthew 6:34
Do that one thing, and you’ll get through this. Because the truth is, with medically complex kids, the next one thing is all you can do. That doesn’t change. You might as well get used to it now.
No nonsense. No fluff. Right to the point.