Wednesday, February 10, 2016

How Our Son's Congenital Heart Disease (CHD) Brought About Joy and Positive Changes

It's time you meet Malcolm, better known as Little Braveheart, my nephew's son. Though Mal is not even 2 years old he has quite a story, one his Mommy (Julie Johnston) has written about on her blog, Through the Dark Waters. But today, she has penned this guest blog about their little guy. Warning: keep a tissue or two close by.  
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It’s February: a busy time for everyone. Packing a whole month’s worth of activities into a meager 28 days can be a daunting prospect, and you have to deal with the hullabaloo of Valentine’s Day and President’s Day somewhere in there. Of course, if you’re a glutton for punishment and are really into celebrations, February is also Black History Month, National Children’s Dental Health Month, Teen Dating Violence Awareness Month, National Forestry Mulcher Month (?!), Bleeding Disorders Awareness Month and – most importantly, at least to me –CHD (Congenital Heart Defects) Awareness Month. I’ve never been much of a Valentine’s fanatic – I don’t like dead flowers, and romantic dinners are overrated. Presidents Day is a non-holiday (now that I’m an adult and don’t get a day off of school, that is). I couldn’t care less about mulch and, though I’m very much in favor of children having healthy teeth, I don’t see a reason to think about fluoride and floss for a whole month. But CHD Awareness Month is something I can get behind.

Why, you ask?

CHD Awareness Month reminds me that very few things are in my control. As much as I’d like it to be true, life can’t quite be scheduled out neatly in an appointment app. I had planned to have a normal existence: a job, a house, a husband, 1.6 children – the works – and at 32 I was pretty sure I had things all mapped out. It’s funny how fast things can change. One quick jerk of the Cosmic Kaleidoscope - that’s all - and everything around you breaks, realigning into very different patterns before you have time to protest or adjust.

What do you know about congenital heart disorders? Would it surprise you to know that as many as 1 out of 110 children are born with heart defects? Or that 25% of those kids will need surgery to survive? Personally, I didn’t know anything about birth defects until recently, when I was forced to learn in a very personal way.

The Ultrasound That Changed Our World


Ultrasound - profile view of head                                 Proud parents admiring their son                        Open Heart Surgery #2
Nearly two years ago, my husband, Dustin, and I went in to my obstetrician's office for a routine, 20-week ultrasound. Like all expectant parents, we were reasonably excited about the prospect of seeing our baby in action, and even more amped about finally knowing the gender of our little bean. For my own part, I didn't much care whether it was a boy or a girl, but either way I really wanted to know. There were crib sheets to be bought and blankets to be crocheted, and I didn't want to mess around with boring neutral colors any more (besides, white clothes are incredibly impractical and - I cannot state this strongly enough - nobody looks good or has ever looked good in pale yellow).

I had obligingly filled my bladder full to bursting, per my doctor’s request, and it was protesting. Loudly. I attempted to ignore the discomfort as the sonographer messed around, taking what seemed to me a lot of unnecessary pictures of toes and fingers and brain lobes before she got around to the genitals…and revealed that we were having a boy! I had been pretty certain it was a girl, so of course I was shocked and happy - and bitterly disappointed that I wouldn't be able to use my daughter’s old clothes - and generally overwhelmed and pleased as punch. I ran the whole gamut of a pregnant lady’s emotional range in the span of two minutes. And then I got to pee! Life was good.

After the gender reveal I was finally allowed to give my poor bladder some relief, and the rest of the ultrasound seemed unimportant and anticlimactic. More than anything at that point I just wanted it to be over, so we could go call our parents and tell them the great news. But the sonographer continued to take a tiresome amount of pictures, especially of our little guy’s heart. She stopped making casual chit-chat.

"I can't get a good enough angle," she kept saying, becoming increasingly frustrated.

I didn’t notice her distress, or maybe I just chalked it up to peevishness. All I could think was, I don't care what angle you get, just hurry it up lady, because I've got people to call.

She kept trying for what seemed like hours, frowning in concentration. And after an eternity, she finally let us go out into the waiting room.

Shocking Results

The nurse called us back to the exam room after a few minutes for the results of the ultrasound, and my doctor met us in the hallway, which was odd. Usually I would have to be weighed and measured and have my blood pressure checked before seeing the actual doc. I love my OB/GYN, and he’s a really happy, cheerful kind of guy. But this time he sat us down, with no preliminary small talk or pleasantries, and cut to the chase.

"The sonographer thinks there may be something wrong with the baby's heart," he said, "I don't know how serious it is, but I need you to go up to Portland to see a perinatologist and have further studies done. Right now."

I met Dustin's eyes briefly. They looked shocked, concerned. Scared. My head reeling, I managed to look at the doctor again.

"Wait, how bad is it? Is he going to be okay?” I paused and searched my brain for an ominous phrase I had heard before, “Is the defect…compatible with life?”

He shook his head. "I don't know," he said. "I hope so."

And then, just like that, the appointment was over. He stood up, ushered us out of the room, and gave us a map to a hospital in the city. The last thing he said was "I’m sorry.”

I held it together until we got into the car, and then the tears started flowing. Dustin was brave, trying hard to be supportive.

"He said there may be something wrong with the baby's heart. It might be nothing. Or it might be something that doesn't even need to be fixed. We don't know anything yet. Don't panic."

The rest of the drive we sat quietly, stunned into silence. We arrived at the hospital and were quickly shuffled into yet another dark ultrasound room. And for the second time that day, my stomach was covered with warm, gelatinous muck. And for the second time that day, we saw our baby up on a screen – our Malcolm - moving around, sucking his toes.

Another Ultrasound, Another Doctor

The sonographer poked around for ages, taking various pictures of Malcolm's heart. Hundreds of them. She was acting very cheerful and normal, which I appreciated tremendously, and she managed to remain cheerful even when eventually calling in for reinforcements. Then there were two of them in the tiny dark room, pushing and prodding me, talking quickly in low tones, using words I didn't understand. After a time, the second tech left to call in for even more reinforcements. While she was gone, I worked up my courage and spoke to the woman who had begun the ultrasound.

"Umm…My obstetrician just said there might be something wrong with the baby's heart. Is there actually something wrong?"

"Oh, yeah," she said, briskly. "There is definitely something very wrong here."
My heart seemed to fill my chest.

"Is it really bad?"

She stopped what she was doing for a minute and took the time to look at me for a minute. "It's complex," she said, and left it at that.

Soon, the perinatologist herself finally came in to talk to us. She told us what we already suspected at this point: there was something very wrong with Malcolm's heart. She explained that the defects were well above her pay grade, and that they would be calling in a pediatric cardiologist the next day to weigh in on the situation. For the second time that day, I asked if the defects were compatible with life. This time I was genuinely afraid of the answer.

"I don't know," she said, and grabbed my hand. "You...you need to prepare yourself for the strong possibility that the baby may die shortly after birth. I am obliged to tell you that you are still legally eligible for an abortion at this point in your pregnancy, and you will need to consider that option."

She talked for a little while about genetic testing, but I wasn’t listening anymore. Soon, she rose to leave and then stopped herself, choosing her words carefully.

"All the rest of your baby's organs are perfectly formed and completely normal." She smiled. "That is a very encouraging sign. Let's just see what the cardiologist has to say tomorrow. Get some rest."

Dustin and I staggered out of the hospital and found our way into the parking garage. And there, the reality of the situation finally sunk it. We sat, holding each other tight, huddled together in our stiflingly hot Jeep, sobbing uncontrollably. The only thing I could think was my baby doesn't know he's dying. Oh God, he doesn't know he's dying. He thinks he's safe. He’s sucking his toes. He doesn't know that he’s already dead...

A Very Long Night

I cannot describe the next twenty-four hours except to say that they comprised a true dark night of the soul. I remember my parents bringing us some Kentucky Fried Chicken, because we didn’t have the heart to feed ourselves; I wept into the gravy. I remember hearing Dustin call his parents. He started out strong “It’s a boy!” he said. And then he began to cry as he delivered the rest of the news. We tried to make things as normal as we could. We tucked in our then two-year-old daughter, Penelope. We watched a little TV. We allowed the numbness that inevitably descends after an emotional rollercoaster to take over.

After a few hours of fitful sleep that night, I awoke at 3:00 AM, crying my heart out. The numbness had worn off, and what I was left with hurt more than anything I could ever have imagined. I honestly couldn't see how things could turn out okay. Even if Malcolm could be fixed....even if he could live outside the womb...what would become of him? Would he be a sickly child and eventually pass away at age 9 or 10? Would he slowly fade away as a toddler, waiting for a transplant that never came? Or would I be forced to carry him to term, give birth, and hold him as his life ebbed away over a period of hours or minutes? What do you even do with babies that die, I wondered. Should we cremate him, or bury him? Do you give a memorial service for a baby that only lived a few hours?

My brain turned over and over, exploring each horrible possibility, and I called out to God, begging for Malcolm’s life. I didn’t bother trying to bargain. Please spare him, I prayed. He deserves a chance at life. He deserves to grow up. Please. Dustin woke up and held me tight. "It could still be okay. It might still be okay," he whispered.

"How?" I asked, bitterly.

"It just...things could still work out." He squeezed me tight and rubbed my belly. "Somehow, we'll make it through."


There were good days, and bad days . . . but Mal seemed to never lose his smile. 

The Next Day

We returned to the hospital the next morning and sat wordlessly in the waiting room, hands clasped together. We were taken back to the same dark room, where I was plied again with the same sticky gel. The cardiologist - an odd little man, God bless him - came in quietly and began to look at the images of Malcolm's heart. For an hour, or more, he held whispered conferences with the ultrasound technician. They took recordings of the baby's heart rhythms. They took three dimensional pictures of his heart from every angle. They used a special technology to watch the direction of blood flow from one chamber to another.

At one point during the procedure Malcolm kicked the ultrasound wand, hard. The cardiologist chuckled.

“How many weeks along are you?” he asked, incredulously. “That’s the strongest twenty-weeker I’ve ever felt.” Then he directed his comments to my stomach. “It’s okay, sweetheart,” he said. “Just roll over for us. We need to see your left side.” Malcolm obliged.

Dustin and I listened greedily for clues, wondering if Malcolm’s fate had been decided. But the jargon was too complicated, and the cardiologist and his assistant were too in sync with one another. They were speaking in a sort of medical shorthand, finishing each other’s thoughts, trailing off, using specialized words. We couldn’t follow the conversation.

Words of Hope

When the doctor had seen everything he wanted to see, he turned off the machines and meditatively washed his hands. Then he sat on the edge of the bed where I was lying and began talking rapidly, with his eyes closed. It was an odd tic, but an endearing one.

"Your baby has a condition called Hypoplastic Left Heart Syndrome, which means that his left ventricle is small and undeveloped. It’s unusable. He also has a condition called Double Outlet Right Ventricle, which means that his pulmonary artery and aorta are both attached to the right ventricle. They’re also wired backwards, which is called Transposition of the Great Arteries. And,” he threw in as an afterthought, “He’s got a huge hole in the middle of his heart.”

We sat quietly, stunned by the news, unsure how to interpret it. But the doctor kept talking.

“So there will be three surgeries. The first one about six weeks after he's born, and the second three or four months afterwards. The third will be when he's three or four years old."

There was a long silence.

"Wait," I said, confused. "Are you saying he's going to live?"

"Oh yes, of course," he said, and continued, apologetically, "Now, he'll be able to run and play and participate in gym at school, but I must warn you that he'll never be able to compete in sports at a professional level."


Mal out for a walk with sister and Mommy.
It took me a long time to process his words. What did they mean? What was he talking about? My son would be taking...gym classes? Gym classes. Okay, Malcolm would take gym classes, because...because...that’s what kids do when they go to school. Okay, Malcolm would be going to go to school, which meant…what exactly? Then it hit me. He was going to grow up. He was going to grow up and go to school and hate gym class, just like everybody else. It was the sweetest realization of my entire life.

The rest of the appointment passed by in a blur. I vaguely remember them performing an amniocentesis to check for genetic defects. A genetic counselor came and talked to us for a while. But I couldn’t pay attention to anything. Malcolm was going to grow up. My baby was going to grow up. He would get his chance at life. It would all be very hard, of course, but HE WAS GOING TO LIVE!!!

I never would have believed it at the time, but that horrible day, that 24 hour period when we thought our baby was as good as dead, turned out to be a precious gift. The news that he would have to undergo three major open heart surgeries would have been crushing in normal circumstances. But considering the situation we were in, it was the best news we ever could have received. It was break-out-the-brass-band kind of news. It was call-the-mayor-and-arrange-a-ticker-tape-parade kind of news. I don’t think I’ve ever been as happy as I was in that moment.

Adjusting and Enjoying Life


The Johnston Family: Dustin, Julie, Penelope and Mal

That euphoria remained, and carried both Dustin and I through the events of the next year and a half. It helped us survive sixteen weeks of bed rest. It got us through a difficult birth, and five (not three!) surgeries, the first when Mal was only three weeks old. That feeling of overwhelming grace brought us safely through multiple hospital stays, through a diagnosis of failure to thrive, through countless feeding issues, weight issues, and vomiting issues. For four straight months in 2014, we had no sleep, no money, and no time. But believe me when I say that nothing in my life will ever be as bad as that night when I thought my baby was going to die without a chance or a say in what happened to him.

Of course, things have been very hard. We knew they would be. This is not the life I imagined for myself. Nowhere in any of my adolescent daydreams was there room for gastronomy tubes, or wound care, or scary medical equipment. Though Malcolm’s health situation now isn’t quite as precarious as it has been, he still requires special attention. But every morning, when I wake up and see his crooked smile and his crazy hair, I know that everything we’ve been through has been worthwhile. I have never once regretted the circumstances of Mal’s birth, and strange as it seems, I wouldn’t change anything, even if I could. Something happened to me when I faced the death of my child. Something good. I have always been a fearful person: anxious, fretful, afraid of life. But I’m Teflon-coated now. After you’ve seen your baby knocked out and cut up and put back together, little things like house payments and cars breaking down don’t have power to affect your life anymore.

It’s February. Time for red and pink hearts, and chalky candy messages, and mulch-awareness, if that’s what you’re into. But for me, February will always be the time I remember how lucky I am to have given birth to a survivor. Happy CHD Awareness Month, everybody!
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Mal continues to improve but still has medical challenges, plus one more heart surgery down the line. Unless you are a nurse and can detect certain symptoms he seems like any other little boy who loves toys and his munchies. He's definitely a joy to his family and many others. 

I know this post has been longer than usual but it's not often you find someone willing to be so transparent. Thanks for giving it your time and possibly passing it on to someone who could benefit by it.   

Julie C (Mal's great aunt)



4 comments:

  1. What a story, Julie. But I rejoiced in the pictures of this beautiful family and this adorable little guy. God is so good. "We don't know what's in our future, but we know Who holds our hand." Thank you for sharing this.

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  2. It is a remarkable story and so much got left untold due to space. God has repeatedly amazed us all as we've watched, prayed, and trusted in His perfect plan. Been hard, but also wonderful.

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  3. Wow! An incredible story and very touching. Thank you for sharing. I give God all the the glory for saving Malcolm and carrying you all through.

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    1. I know the story well but also touched every time I read Julie J's words. Thanks for letting me know your response. Will pass on your comment to Mal's Mommy.

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Always happy to hear from anyone who stops by my blog.