New Diagnosis – Brooke’s Story

This Week, Brooke Wilkerson shares the story of her son’s prenatal misdiagnosis, the correct diagnosis after birth, and the roller coaster of emotions the journey brought. 

“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.”

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, I would make the long commute 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.”

Every time, multiple technician’s would have a go at my son’s anatomy scan, like a game of darts, and when no one could hit the bull’s eye, they’d eventually give up. 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. Every appointment lasted over an hour and for about 4-5 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 CHD, and we had to decide if we wanted to deliver there or in Louisville- 1.5 hours away. By delivering locally, we risked being separated if baby Miles was transferred to the children’s hospital.

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 asked me if I wanted to come back in two weeks, and try one last time and I agreed, even though I knew what would happen. I no longer expected an answer.

The morning of my last echo, I wasn’t expecting an answer. I fully expected it to be just like the other ones- leaving disappointed. 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. He left the room, and came back with a pen and paper in hand, and when he 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?

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. 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 CHD.

We didn’t know what would happen when Miles was born. Would he be pink? Blue? 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!” I thought, 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.”

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 a 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.

At four months old, Miles had open heart surgery. 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, 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.

We are forever indebted to that team of doctors and nurses.

Brooke Wilkerson is a 28 year old wife and mom to three, living in the Nashville, TN area. Brooke also started the Coffee & Chaos Blog last year, which is all about motherhood, marriage, and how to laugh at the chaos. Her middle child, Miles, was born with a CHD and required open heart surgery at 4 months old. He’s also the inspiration behind the blog, due to his mischievous personality. He’s doing great now, and there are no future surgeries planned for him! Brooke uses her platform to raise awareness for CHD and is hosting an event this October where a portion of the proceeds will be donated to PCHA.

2 thoughts on “New Diagnosis – Brooke’s Story

  1. Amit Shah on said:

    Brooke, Thank you for sharing. While we have a completely different journey you said a couple of things that really hit at the heart for me and my wife (no pun intended).

    “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.”

    “We didn’t know what would happen when Miles was born. Would he be pink? Blue? 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!” I thought, but, I didn’t have to hold my breath for very long, because he did cry. And he screamed. ”

    When our son was born it was the most amazing day and scariest day in our lives. Thank you for sharing, we know a lot of how you feel on this crazy rollercoaster. While our son does not require surgical intervention today we are scared of the day when the cardiologist tells us it is time.

    Amit