Just Say It | Our Journey with CHD.

*This post contains medically graphic images*

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Photo Credit: Misty Carter Photography

 

“There’s something wrong with your baby’s heart.”

“Just say it,” I thought.

“Just tell me that there is something wrong so that I can mentally prepare myself for what’s ahead.”

“Just tell me what his diagnosis is so that I can google research until my eyes are dry and my heart is pounding.”

“Just tell me that he’ll need open heart surgery or a heart transplant or whatever it will be- just tell me! Please, tell me!”

At eight months pregnant, I never thought I would think these things.

I never thought that I would actually wish for that statement.

But, I did.

I wanted to hear those words because not knowing was agonizing. There was a lump in my throat that formed at our twenty week anatomy scan and it wasn’t able to release until I knew, for sure. I knew that there was something wrong. They thought that something might be wrong. But no one could confirm it.

Every month, sometimes twice a month, I would make the one and a half hour commute, one way, to Louisville, to see a specialist who told me the same thing every time- “We can’t get a clear picture of his heart. Everything else looks okay- he’s growing and active- but we can’t say, for sure, if there’s something wrong. We’ll try again next month.”

Every time, multiple ultrasound technician’s would have a go at my son’s anatomy scan, like a game of darts, and when no one could hit the bullseye, they’d eventually give up. Then, the cardiologist on staff that day would try, with the same results.

They just didn’t know.

Every month I would get my hopes up that today would be the day that they just delivered the devastating news; that they would tell me what was wrong; that they would tell me that the reason why they couldn’t get a good picture of his heart is because it wasn’t normal.

I was on the cusp of having my life turned upside down and the anticipation had me by the throat.

It’s like knowing that something “bad” is going to happen “soon,” but you don’t know when “soon” is or how “bad” it’s going to be.

Every appointment lasted over an hour. My husband would be texting me before I even finished- hoping to get an answer. But, for about four to five months, I made the drive- I laid on the uncomfortable bed for over an hour just to get the same result.

This limbo that we were in changed everything.

I knew that my baby was okay in the womb, and I no longer looked forward to his birth. I just wanted him to stay put- to stay safe- because his birth now came with a lot of uncertainties and fear. At least, while he was still with me, I could feel him move everyday and know that he’s okay; I could take comfort in knowing that, while his heart may not support him after birth, I could carry the weight for him right now.

As we neared my due date, the pressure was intense. Our local hospital was not equipped to deal with a baby with a Congenital Heart Defect, and we had to decide if we wanted to deliver there or in Louisville- one and a half hours away. By delivering locally, we risked being separated if baby Miles was transferred to the children’s hospital.

I couldn’t risk having my baby taken away from me, especially if he did have a heart defect.

Four weeks until my due date, and we had, what was supposed to be my last fetal echocardiogram. Again, the results were the same. No one knew. They couldn’t confirm or deny. If they had to guess, he was okay- but what were the consequences if they were wrong?

No one was confident enough to place a bet.

The cardiologist could sense my anxiety when she asked me what my decision was on where I would deliver.

I didn’t want to answer this question.

I didn’t want to decide.

I wanted them to tell me that, either he was okay and we could deliver locally, or that he was not okay and that we needed to be in Louisville.

I wasn’t supposed to make this decision. I wasn’t supposed to give birth, not knowing what was going to happen. This wasn’t right. This wasn’t in the “what to expect” book.

She asked me if I wanted to come back in two weeks, and try one last time and I unenthusiastically agreed, even though I knew what would happen.

I no longer expected an answer.

The morning of my last echo, I remember texting my husband, who was at work, and telling him that I was thinking about cancelling. I was tired, my 2 year old was off school that day and I just didn’t feel like going.

I don’t know why, but I changed my mind, packed up our stuff and headed to Louisville.

This was the first appointment where I wasn’t expecting an answer. I fully expected it to be just like the other ones- leaving disappointed and nervous and scared.

The technicians all took their turns, and then the last cardiologist in the practice, who we hadn’t seen, yet, Dr. Holland, took a go at it.

I always tried to read the cardiologists’ faces while they did the echo, trying to determine if they had seen something wrong or not, because watching the screen, with my untrained eyes, told me nothing. I didn’t read anything on his face and he ended the echo, and left the room, just like the ones before him. I didn’t sense any cause for concern.

So, when he came back in the room with a pen and paper in hand, and spoke the words, “Tetraology of Fallot,” I was completely taken aback.

I don’t remember what he said after that, aside from “open-heart surgery between four to six months old.” I clearly remember tuning out his words, and telling myself to hold it together- “Don’t cry. Just smile and nod.” Did I even speak after that?

miles-3rd-pic.jpg

My throat was on fire, and my heart was racing. I had finally gotten what I had asked for- an answer. As he drew two hearts on a piece of paper- one normal, and one, my baby’s- I tried to focus on my restless two year old and act like this was okay- just another day at the doctor’s office. He told me that we would deliver in Louisville, and that there would be a full heart team on stand-by, but we still didn’t know what to expect or how severe his disease was.

As soon as I opened my car door, the four month old lump in my throat exploded. I hadn’t even comprehended what he had said- I didn’t even remember the name of the diagnosis and, had he not written it out on that paper for me, I wouldn’t have known what to tell my husband, who had been texting me non-stop when this appointment went longer than the others.

My baby was going to require open heart surgery to survive.

They were going to put him on a machine that would act as his heart and lungs, saw through his breast bone, patch up a hole in his tiny heart, and then, put him all back together.

Without this surgery, he, likely, would not survive to see his first birthday, or would be very sick if he did.

I remember how the words, “open heart surgery” stung; how they felt so foreign and extreme and I remember saying those words as if they were a question when we told our family about his heart defect.

I thought that only old people had open heart surgery- people who had lived half a life already- not babies, who hadn’t yet taken their first bite of baby food.

We didn’t know what would happen when Miles was born.

Would he be pink? Blue? Healthy? Critical?

There were so many people in the delivery room, ready to jump into action.

I think I held my breath when I felt them pull him from my womb- waiting to hear him cry.

“Please, cry. Scream, Miles! Let me hear you cry!”

But, I didn’t have to hold my breath for very long, because he did cry.

And he screamed.

And when they held him up over the curtain, he was a chunky, eight pound, PINK baby!

“Thank you, Jesus.”

We were able to take a quick picture with him before they rolled him to the NICU to start running tests.

Miles Birth Pic

 

It was hours before I was able to see him again. The children’s hospital was connected to the women’s hospital, but it was a long walk, and I wasn’t able to go until I could feel my legs again. Even then, someone would have to wheel me over to him in a wheel chair.

However, his first echo, out of the womb, told a different story.

We were told that he did NOT have Tetraology of Fallot; that he would NOT require open heart surgery and that the hole in his heart would heal on it’s own.

Suddenly, all of the suffering and waiting was worth it. I’d do it all over again, if I knew that they would be wrong. We shared the good news with our friends and family, left the hospital several days later and, for the first time in months, breathed a little easier.

But, that was short-lived. At Miles’ follow-up echo, a week later, Dr. Holland apologized when he told me that they got it wrong. I could tell that he felt so bad when he told me that he saw the first echo and had agreed with the cardiologist on staff when Miles was born! He couldn’t explain to me what happened- why we were on this roller coaster- but, he was confident when he told me, again, that Miles DID have Tetraology of Fallot and that he DID need open heart surgery.

Again, I was not expecting that.

I remember thinking to myself, either Dr. Holland is really great at his job- so great, that he’s able to see things that no one else is seeing- or he’s really terrible and subsequently, torturing us.

My husband, our friends and family- nobody really believed him this time.

“Doctors misdiagnose all the time,” they told me.

“There isn’t a thing wrong with that baby,” they stated.

And, for the most part, they were right. Aside from a heart murmur, Miles didn’t show any symptoms of a heart defect. His O2 levels were always good; He never had breathing troubles; He never turned blue. If I didn’t know any better, I would think that he was completely normal.

And while so many people around us didn’t want to believe it, I did believe it and I don’t know why. But, I’m glad that I did. I’m glad that I listened when Dr. Holland told me what the symptoms of congestive heart failure would be, because when Miles started showing them, he went downhill quickly.

All of the sudden, at 3 months old, Miles was having subcostal retractions that didn’t improve with medicine; he was breathing hard and you could see his heart moving in his chest; he started to sleep all day and all night long and he couldn’t stay awake long enough to finish eating.

His heart was failing.

Dr. Holland was right.

Miles’ heart was enlarged, because, just like a muscle, when a heart is working hard, it grows- it gets bigger. And his heart had been working really hard to appear “normal” all this time. But, it couldn’t do it any longer.

I remember when a friend-of-a-friend held Miles for the first time. We didn’t really know her and she had never seen Miles before. She didn’t have any kids of her own, but almost immediately, she asked us why his heart was beating so hard.

It was that obvious.

At four months old, on March 11th, 2016, Miles had open heart surgery.

Miles 1st pic

One day, I’ll figure out how to write the feelings from that day down with words, but I’m still figuring those words out.

Miles 2nd pic

We are so incredibly blessed that his surgery went well. Aside from a few complications, we were able to go home (for good) after ten days in the hospital. Miles’ heart was finally able to rest, and in no time, you couldn’t see it moving anymore. He quickly caught up on his weight that he had fallen behind on, and he was happy to eat without tiring.

As it turns out, Dr. Holland is an amazing doctor and Miles’ VSD (the hole in his heart) was actually much larger than they had anticipated.

He’s now the basis for this blog- my sour patch kid, as I call him. And while, most days, he drives me insane with his mischievousness and curiosity- I can’t help but be in awe of him. Aside from his thin, jagged scar and pacer wire scars, you’d never know that he was born with a congenital heart defect.

You’d never know that, historically, Miles wouldn’t have survived.

You wouldn’t know that after his open heart surgery, he required a pacemaker because his heart wasn’t working properly.

You’d never know that he caught a virus in the hospital and had to be re-admitted after being released just a day prior.

You’d never know that at just four months old, his life was saved.

And that we are forever indebted to that team of doctors and nurses.

Miles 4th pic


February is CHD awareness month and while Miles’ story sounds unique- the only unique part about it, is that he only required one surgery.

Most CHD baby’s will require numerous procedures and surgeries, and sadly, we still have babies and children dying from CHD today.

I am overwhelmed with survivor’s guilt when I hear of these stories, and I advocate for CHD research on their behalf.

I am acutely aware of how different this story could’ve been.

CHD is the number one birth defect in the U.S., but there’s still so much that we don’t know about it.

We don’t know what causes CHD.

We don’t know how to cure CHD.

Right now, we only have temporary fixes and CHD patients require lifelong care.

Miles’ prognosis looks great- it’s not expected that he’ll require any more surgeries, but that’s not a guarantee.

We now see his cardiologist once a year, to check on his heart, because he is not cured.

And, at this point in time, he will never be cured.

We will still have babies suffering with CHD and still witness children dying from CHD because funding for CHD research is lacking.

For more information on CHD and how you can help, please visit the Pediatric Congenital Heart Association’s website at: www.conqueringchd.org.

To keep up with Miles’ journey, follow the Team Miles page on Facebook!

 

 



 

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2 thoughts on “Just Say It | Our Journey with CHD.

  1. Michelle Simpson says:

    Thank you for being an advocate!! Until you have a child with CHD you cannot know the feelings as you described. 12 yrs ago I was pregnant with my son. At 5 months pregnant they told me he had hypoplastic left heart syndrome. I gave birth to him & he was perfect looking. You’d never know there was anything wrong with him. 9 days later he died. That is a pain in my heart that will never go away.

    Like

  2. Christina Bumgardner says:

    Thank you for sharing your story. I am a CHD kid. The holes in my heart were not found until I was 6! I had open heart surgery and I still see my cardiologist every year. It’s been 22 years since my surgery, I have two babies and I had to see a specialist during each pregnancy to check for a defect in my babies hearts ( I held my breathe every minute until they told me everything looked great) and to make sure mine was functioning properly during each pregnancy. Thank you again for sharing. My mom and I talk about the day she found out about my defect and it sounds very similar to the day you found out, she doesn’t remember all the words but she says it felt like she was falling and just tried to keep it all together for me. I love your blog and you always make my day when you make a new video. I have a SPK so I can totally relate

    Like

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