Crazy Heart Mama

I woke up Tuesday morning to several texts and messages from friends that included the clip of Jimmy Kimmel’s dialogue about his son, Billy, born with the congenital heart disease, Tetrology of Fallot with Pulmonary Atresia. It’s an amazing story. It’s so much like my story and the stories of millions of people across the country affected by congenital heart disease.

Jimmy Kimmel was strong and vulnerable and funny all at the same time. I wasn’t sure how he’d get through it. Because at ten days out when your baby has just had heart surgery six days before, it’s just so raw. But he didn’t just get through it.

He rocked it.

I applaud his courage in talking about his experience, but I was really impressed with his call to action regarding children’s healthcare. There’s no doubt in my mind that he was thankful to have access to great healthcare in regards to his son. In listening to him speak, you can’t miss that as he sat there worried about his newborn, he, like many of us who have sat bedside with a critically-ill baby, looked around a full cardiovascular intensive care unit and thought about all those babies and children. He really thought about every child in Children’s Hospital of Los Angeles, and the children in children’s hospitals across the country, and what having access to healthcare really means to every one of those kids and their parents.

“No parent should ever have to decide if they can afford to save their child’s life. It just shouldn’t happen. Not here.” ~Jimmy Kimmel.

Then I watched over the next 36 hours people spew hate and venom at Jimmy Kimmel for sharing one of the most intimate and heartbreaking experiences he’s ever been through.

(I’m looking at you, Joe Walsh.)

Then I saw several threads on Facebook last night sharing conspiracy theories that since doctors do not know what causes CHDs, then they must be related to vaccines. My head almost exploded.

I took a deep breath, and reminded myself that you can’t fix stupid. It’s just not possible.

We’re all shaped by our individual experiences. My experience is handing my baby boy over for his first of three open-heart surgeries when he was just three days old. My experience was absolute sheer terror I would lose him; that he would die on the table before they could get him back into my arms. My first instinct was to tell all my friends and family upon seeing him, “No one cries.” And if they did, they needed to get out. Because I was scared to death if I started crying, I might not ever be able to stop.

I was absolutely overwhelmed by the number of babies in the PICU with heart defects. Acronyms I’d come to know. HLHS, HRHS, TOF, TGA, Shones Complex and all the many variations of heart defects. No two are just alike. And there are over 40 identifiable defects. Identifiable. Because there are hundreds of kids who don’t really fit into a specific category. They’ve got their own set of life-threatening heart defects going on. Two babies died while Colman was in the PICU the first time.

Then when Colman was well enough to be sent home, I experienced a joyful happiness mixed with more terror and worry. YES! Home, finally…without the help and support of the people who had done such a great job of keeping him alive. Talk about inadequacy. More worry about the next heart surgery that would be happening within a matter of months.

Somehow I kept thinking if I could just get him through these three heart surgeries, he’d be okay. I desperately wanted that part of our lives over. I wanted a place where we could breathe a little easier. And when we finally made it to that point, that’s not been my experience. These children require a lifetime of medical management, and the worry over their hearts and health never goes away. The worry that I won’t be able to save him one day? That worry never goes away.

A lifetime of medical management costs a lot of money. Surgery to repair congenital heart defects costs over $2 billion a year. That’s just the surgery part. That’s not the management part. It is crazy expensive. Colman’s care has run well into the millions of dollars.

I realize this is not the experience of the average American family with 2.3 kids. I understand that. And believe me when I tell you, I’m so happy that my experience is not the norm. I’m happy my experience is not that of most of my friends and family. I’m thrilled if you’ve never looked around a PICU and thought to yourself, What can I do? How can I help? What work needs to be done?

Because in the last 13 years, I’ve seen legislation passed for mandatory pulse oximetry testing in hospitals across the fifty states that has saved the lives of thousands of babies by detecting heart defects that might’ve been missed. That movement was started by heart moms and dads.

Surgeries to repair children with complex congenital heart defects has gotten better and better. And because those surgeries have improved over the last couple of decades, we now have adults living with congenital heart disease, which has created a new need in the medical community for hybrid cardiologists. Our community now needs a new specialty of cardiologists who only deal with adults born with CHD.

Colman was born before the Affordable Care Act came into effect. I’ve dealt with insurance companies before the ACA and after. I can tell you it is definitely better with the ACA, but the health insurance companies still act bad. It could be better. Our work is not done. I’ve spent thousands of hours on the phone over the past 13 years as insurance companies go against the advice of Colman’s doctors on what they would and wouldn’t pay for when it came to life-saving medications for my son. Medications that for over a year cost in excess of $20,000 a month. Go without? Go out-of-pocket? Medical bankruptcy? These are the choices parents of sick children make every day.

So when someone gripes about how much money their insurance costs and the deductibles, I get it. I understand it. I know where they’re coming from. Their kids aren’t sick. They don’t plan on ever having sick kids. That money could be put to much better use for clothing and after school activities or family vacations. I meet my max out-of-pocket deductibles every single year, and I listen with grace and compassion because I understand that I’ve been in a place I hope they will never be.

I tell people about Colman to bring awareness for congenital heart defects. I wrote a book about my experience because I wanted to reach out to the heart community and the people joining this heart community on a daily basis to let them know that you can live through this. It’s hard. It’s terrifying. There are moments where you want to absolutely scream in desperation and frustration, but you will find joy and humor. You will get through it.

Less than twelve hours after I saw the Jimmy Kimmel clip for the first time, I was at a soccer party for my youngest son and one of the moms was asking if any of my other boys played soccer. I told her my oldest son played soccer. When she asked about Colman, I said, “No. He has a heart problem. His doctors don’t want him playing soccer.”

And she said, “Oh, like Jimmy Kimmel’s son?”

I almost laughed because it was such a different response than what I normally get, which is, Oh, does he have a hole or a murmur? I thought to myself, Wow. It’s the Kimmel effect, and I wanted to thank Jimmy Kimmel as I said, “Kind of like that, but Colman has different defects.”

Thank you, Jimmy Kimmel. CHD sucks. You know that already. But what I’m not sure you understand yet is you’ve done more in 13 minutes than hundreds of thousands of us have been able to do in the last 13 years and longer. And to all the haters that have come out of the woodwork, as we say in the South, bless their hearts. Hopefully they won’t ever get it in the same way those of us who are in the trenches get it.

I showed Colman the clip of Jimmy Kimmel, and he said, “His life will never be the same. He got lucky. He’s got one of the cool kids.”

Welcome to the world, Billy Kimmel!