The Christmas We Spent in the Cardiac Ward With Our Daughter


The run-up to Christmas can be a stressful time: cards to write, presents to buy, parties to attend. So much to do. But four years ago, we could barely focus on the festive season. All around us it seemed everyone was excited about Christmas, but for us there was a huge obstacle in the way. Our 3-month-old daughter was about to undergo her second open-heart surgery. 

While everyone else seemed to be caught up in the hustle and bustle, we focused on family time and making memories. Enjoying the time we still had together and not knowing what the future would bring.

While those around us were doing their Christmas shopping, we were praying in a hospital chapel, pacing the floor and trying to fill those endless hours while our baby was in surgery.

Those last few shopping days before Christmas were spent sitting beside a bed on the pediatric intensive care unit as our daughter recovered from surgery.

The biggest excitement on Christmas Eve was our daughter being well enough to move from intensive care to high dependency.

We sent only a handful of cards. What little Christmas shopping we did was done in one afternoon when we managed to leave the hospital for a few hours.

When I woke up on Christmas morning, I found a stocking next to my daughter’s bed with a few small gifts from Santa. My hubby and I had not been forgotten, either; there was something for each of us. Just a small present but it meant a lot.

We spent most of Christmas Day with our daughter. She gave us the best gift ever that morning: the first smile since her surgery. Being able to enjoy cuddles with her again after over a week of not being able to hold her at all was utterly blissful.

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Hubby’s parents came to visit, bringing Christmas dinner with them. We had been given the key to a friends’ house. They were away for Christmas but invited us into their home so we could enjoy our Christmas dinner in comfy and cozy surroundings. A brief time to step away from the hospital routine and recharge our batteries. Later that evening, another friend visited, bearing presents and food and taking time out of her own family Christmas to help make ours better.

We weren’t surrounded by machines, tubes and wires; we were surrounded by love and prayers, family and friends, thoughtfulness and kindness. 

I learned more about the real meaning of Christmas that year than in all the other Merry Christmases I have experienced since.

I learned it didn’t matter where we spent Christmas; the fact that we were together was really all that mattered.

I learned just how kind and generous people could be.

I learned the best gifts were those that money could never buy: a smile, a cuddle and the love and support of family and friends.

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I learned that Christmas didn’t have to be perfect to be magical. As long as there was love, there would be magic.

I learned to be thankful for what I had, to enjoy the moment and to focus on the things that really were important.

Being in hospital wasn’t where I would have ever chosen to spend our first Christmas as a family, but the memory of it is a beautiful one.

There was love, there was joy and there was magic.

We had each other, and, therefore, we had everything.

Follow this journey on Little Hearts, Big Love.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness during the holiday season, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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What People Get Wrong About 'Happy and Healthy' Babies


You don’t expect to have your core rattled walking down the greeting card aisle at Target, or standing in line at the grocery store, or sitting on a shaded bench quietly. But then, isn’t it so often during these unexpected moments when lessons unveil themselves from dusty shadows, and epiphanies lean whispering into our ears?  The first time it was shortly after my son Walter’s diagnosis in-utero. The next time was well into my third trimester. The third time happened with my 3-week-old baby at the park.

“Congratulations!” read the card, “…on your perfect baby boy!”

“10 little fingers, 10 little toes, beating healthy heart, and a button nose,” exclaimed another.

“Oh don’t you worry about a thing, honey,” cooed an experienced older lady, “as long as that baby’s healthy – that’s all that matters.”

“What a cute baby!” cried a mother of three, “Boy — or girl. Well what does it matter, he’s happy and healthy! What else could you hope for?!”

There were others, too. Like the small boy at the Children’s Hospital who tugged his mother’s sleeve and asked why the baby in the elevator with him was visiting the hospital.

“He’s not sick,” the boy observed.

“Well, healthy babies go to the doctor, too,” she replied.

It was the morning of Walter’s second open-heart surgery.

Over the course of my pregnancy, and Walter’s days spent outside the hospital, this tableau seemed to repeat itself time and time again. I rarely corrected the inquirers or told them that this happy little boy was actually not so healthy. Every encounter was, after all, well-intentioned. As months went by, it became a kind of relief not to give my “elevator speech” about Walter’s heart to casual acquaintances or passersby. I was able to duck the series of questions that inevitably ensued about how congenital heart defects occur, whether they’re avoidable in pregnancy and whether he’ll be “as good as new” after multiple surgeries.

See, Walter isn’t perfect. Nor is my husband, you, or I. But in his innocence and purity, Walter’s imperfection is simply more obvious than those around him. Walter was born broken, as we all are. I don’t want him to be “as good as new” because that would present itself as a death sentence anatomically speaking, and little growth developmentally. Walter’s brokenness begs unsettling questions about life. Unsettling questions that shatter glass houses and comfortable tranquility. His scar peeks from under his neckline, and his tummy is riddled with chest tube incisions. They are markers of something flawed tangibly, for him, that we all possess intangibly ourselves.

And that is why being his mother for the past year and four months (since we received his diagnosis) has allowed me to see why our expectations for perfect children in perfect families in perfect health is so misguided — because life is fragile and incredibly precious. Even the most flawed among us, and the unhealthy babies given to us, have an immeasurable, unrepeatable value. And because even the healthiest of us know not what tomorrow holds.

Every mother wants nothing but health and goodness for her child. But having Walter has freed me to move beyond perfection. Beyond disappointment and grief, and beyond the more earthly and mundane worries of today. I’ve seen that perfection does not lead us to anywhere but fleetingly false security and an eternity of doubt and sorrow.

As for our blemished, our sick, our scarred and ourselves — my hope is that we will learn to see these moments in our lives as perfectly imperfect. Because we are not given perfection, but purpose.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

To the Mom Who Just Found Out Her Baby Has a Congenital Heart Defect


So much has happened since that fateful day in April 2013 when our lives were changed cataclysmically.

I remember trying to think logically when we came back from our 20-week scan and telling myself, “But blood is being pumped around her body, every part of her has developed and grown and she is still alive. It can’t be that bad.” I had no idea how a fetal heart worked back then. Little did I know that the arterial duct was my baby’s lifeline. But now I could probably label every valve, artery, ventricle and atrium on a diagram of the human heart.

Looking back at that day, I wondered what I tell myself about the journey we were about to embark on.

To the Mom Who Just Found Out Her Baby Has a Congenital Heart Defect,

You haven’t done anything wrong, and there is nothing you could have done differently to avoid this from happening to your unborn baby. In fact, I don’t think you’ll ever get to know why this happened to your baby. You’ll meet countless other parents over your child’s lifetime who will wonder the same thing from time to time. It’s OK to ask, “Why me and why our baby?” But just don’t let yourself dwell on that too much.

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I know the thought that scares you the most right now is surgery. You’re handing over your baby to people you don’t know, and you have to put complete trust in them they’ll take care of your baby. I promise you they will. But it won’t always be smooth sailing when she comes back up to intensive care. It’s just the beginning. Some days it will seem like you’ve taken two steps forward only to take six steps back. But that’s because she wasn’t ready to take those steps. She was being pushed a bit too hard and wanted to remind you that she’s in charge of her own recovery. She will go at her own pace. But when she is ready, she will amaze you. She will come on in leaps and bounds. Some weeks you won’t believe she’s the same baby who you were crying over the week before.

The instinct to protect and fight for your baby will become all the more prevalent. You will learn your baby’s baseline for everything. You will know how much of each drug she should have and watch as each nurse draws up those meds to make sure they’ve done it properly. If a new doctor comes along and suggests a new treatment plan, you’ll question them on why they’re considering these changes and scrutinize all of their ideas. This is OK. You’re her mom, and you’d rather have her cardiologists face the Spanish Inquisition than watch your daughter possibly deteriorate because someone had a new idea. But remember to listen to everything they suggest. They only want what’s best for your baby, too.

Talk to the parents of other babies in the ward. They will be a massive support to you, just as you can be to them. No one will understand your fears better than them. Never underestimate how valuable your experience might be to someone in a similar position. And hearing someone else’s good news will give you hope and strength to fight another day for your baby.

Every achievement and every milestone your baby reaches will leave you bursting with pride. The first time she can eat orally will be your proudest achievement (even if it’s just a tiny bit). But nothing can compare to the day when they say you can take her home. No money in the world could buy that level of happiness. Yes, it will be scary not having a nurse on duty 24/7 or having that trusty monitor displaying her heart rate, blood pressure or oxygen saturation levels. But you’ll probably know your baby isn’t feeling well just by looking at her.

Finally, just take each day as it comes. There may even be occasions when you can only cope by taking each hour at a time. Don’t try to be strong for everyone either. Look after yourself and your baby. If a psychologist visits and asks if you’d like to talk, please accept their offer. There’s a reason why they’re there.

It’s a hell of a journey you are about to embark on, but I promise it’s worth it.

GM

Follow this journey on Heart Mammi.

What My Fellow Moms Don’t Know About My Baby Finally Coming Home


To the Mommas With a Healthy Baby:

I wanted to join your club. Actually, I had no idea I wouldn’t until I was driven to the cardiac intensive care unit approximately 20 hours after giving birth to our little guy.

My son was diagnosed at birth with a rare congenital heart defect called total anomalous pulmonary venous return (TAPVR). He had open-heart surgery and will go on to lead a perfectly normal life, which was the best outcome we could have hoped for. And this is what people tend to focus on when I share his story. I’m grateful for the outcome as well, so please don’t get me wrong. But as soon as you hear he will be OK, you forget what this has done to us and him. Yes, he will be just fine, but I need you to know I’m not fine just yet.

I’m just starting to grieve. My baby went through major surgery. His chest was cut open. The surgeon repaired his heart that was the size of a walnut. You would think I would have been worried about all of this as it was happening, but I wasn’t. I was in denial.

I would walk through the halls of the hospital and (stupidly) think I wasn’t like the rest of the moms in there. My baby was going to be OK. This was just a little bump in his story. We would never have to visit again or have more surgeries, unlike some other patients. We would totally forget about this as soon as he was home with us, nursing like a champ and sleeping through the night.

Little did I know grief would fill the cracks and crevices of my heart. I went home night after night, leaving my baby hooked up to monitors and in the care of nurses. The car seat sat empty in our backseat for weeks. There were no weekly pictures, because he was pale, lethargic and refused to eat.

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Yes, my child is home now. He’s a happy, healthy 8-month-old. But I missed out on so much. He never learned to nurse. I barely held him for the first few days of his life. I toted him around with an oxygen tank and a feeding tube for months. My maternity leave was spent in the pediatrician’s office or in the wings of the children’s hospital. The weight of what I lost is finally sinking in.

His future is full of hope, but mine feels full of worry. I read blogs and Facebook posts of people who weren’t as lucky as we were, and I fear that our little peanut will be taken from us. That his heart will give out when he’s playing at school. That he will regress and refuse to eat again. That he will need another surgery, or he could have an unknown complication.

Routine cardiology visits remind us our munchkin is doing extremely well, and all signs point to a healthy life for him. No surgeries are in his future. I’m grateful every day, because we could be in a situation where we couldn’t bring our sweet boy home.

So thank you for celebrating his health when I share his story, but please know I may need some time. The scar on my baby’s chest has healed and is fading, but the scars hidden in my heart are still fresh with grief. But I will continue to cling to hope. I hope one day to join your club with my healthy, repaired baby and my healing, but scarred, heart.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

What I Want Lincoln University's Basketball Team to Know About My Son


Our 7-year-old son, Blaze, was born with a significant heart defect. Basically, he has half a heart.

Two weeks ago, Blaze was made an honorary member of the Lincoln University men’s basketball team. The team decided to turn their annual “Welcome Back” celebration, Blue Tiger Fest, into a draft day for Blaze. The coach told everyone he’d received an email from someone who wanted to be on the team, which was pretty common. He didn’t have a video of any great jump shots; he didn’t have great height or strength. But by enduring three open-heart surgeries before the age of 3, Blaze demonstrated the tenacity and courage it takes to be a Blue Tiger.

Then, in a booming announcer’s voice, he introduced our son to the crowd, just like the athletes’ names are announced at the beginning of a game. The team surrounded our son on stage, and he was given his team T-shirt with his number on it: #10.

Throughout our journey with Blaze, we’ve been blessed with support from coworkers, fellow church members and various organizations. But this was the first time I felt like we were part of a community. There was a huge group of people cheering him on, supporting their new friend and helping a second-grader feel accepted. He was welcomed by so many.

Next, the drum line performed on the street. Our son couldn’t see, so one of his teammates helped him out by putting him on his shoulders. Our short, little son became the tallest person around. The gesture made him feel included and welcomed.

Honestly, I was a little nervous about this experience at first. Male college students sometimes have a reputation, and I wasn’t sure I wanted my impressionable son spending so much time around them. I was so wrong. The students and coaching staff have been nothing but kind and respectful to all of us. They even let our 2-year-old throw basketballs and they rebounded them for him. Blaze has his own spot in the locker room, and his teammates enjoy teaching him tricks, like how to spin a basketball on a pencil. He’s learning what it’s like to be supported by teammates and what it means to be part of a team.

While he currently participates in Upward Basketball, a youth church basketball league, it’s unlikely Blaze will be able to play basketball when he’s older due to how hard his heart has to work when he runs. Weightlifting will be discouraged because of the strain it would put on his heart.

This may be his only opportunity to see what it’s like to be part of a team. And what an incredible opportunity it is.

Blaze
Photo courtesy of Lincoln University’s Athletics Department

I realize this child/university team match-up was created to benefit Blaze and his teammates, but I think his dad and I might be the ones reaping the most benefits. We, like all other parents, hope for the best for our sons, but we knew there would be some things Blaze just might not get to experience himself. To see this second-grader laughing and at ease with his over-6-feet-tall friends melts my heart.

I wish they knew how grateful I am they take time to interact with him, and how much it means to me to see him so confident. I wish they knew what a gift it is to be able to turn your impressionable, young son over to a room full of role models and know he is safe and having fun. I wish I could express to each of them how thankful I am that they’re contributing the strength and greatness of diversity to Blaze’s life.

Oh, you tough Lincoln players, you might think you’re just having fun with your honorary teammate, but you mean so much more to him… and to us as his parents.

This was made possible through Team IMPACT, an organization that matches children with illnesses and disabilities with university teams in their area. We are grateful for Lincoln University’s willingness to take on our son as a team member!

I Felt Safe From Judgment in Hospitals. Then a Stranger Changed That.


I’ve had people stare when they see my scars from my past open-heart surgeries or when I have a coughing fit and have to take medication. But I’m lucky that in the town I live in, most people are aware of all my health issues and know it’s a part of my everyday life. When people stare, it reminds me that the medical life I’ve known since the day I was born isn’t normal. I don’t know what I’d look like without my scars because my first open-heart surgery was done at less than a day old. When people stare, I’m reminded what I think of as normal is far from it.

Going to hospitals as often as I do, I’ve always felt like it was my safe place — a place where I didn’t feel different. Sadly, that changed about a year ago.

I was just given a type of heart monitor that’s worn over a 30-day period. After the monitor is full (it holds up to six readings), you have to use a landline to call it in. I’d had this kind a handful of times before and I knew exactly what to do and what to expect. Again, this was a part of my normal. I was in Chicago for several days with several appointments and testing scheduled within this time period.

I was in the waiting room to have an X-ray done and saw my heart monitor was full. I walked up to a desk and asked if I could call in my heart monitor. They gave me an empty desk to use as I called it in. The thing about this monitor is when you call it in, it makes a noise. Think how it sounded when you used dial-up and would sign in to AOL. That’s how it sounded. It’s a definite throwback to the ’90s.

I knew other people would stare and wonder what I was doing, but I didn’t mind. It’s a strange sound. When I told the person on the other end about my symptoms after manually pressing the button, the people around me had an idea of what I was doing and stopped staring — except one woman. She looked so upset that you’d think I did something horrible to her. She ended up moving to the other side of the waiting area. I thought for sure I wouldn’t see her again. Sadly, it’s something I have to deal with from time to time, but this was the first time in a hospital this had ever happened.

About 45 minutes later, I went down to the Walgreen’s pharmacy on the second floor to pick up some medications for my breathing treatment. I looked for a seat and I found that same woman in the waiting area. I wanted to find a chair that was far away, but anything open was in earshot of her.

Soon after sitting down, I had to manually press my heart monitor because I was feeling tachycardic heartbeats. When I do that, it makes noise for 15 seconds or so. The woman facing me, now on the phone, rolled her eyes when she heard it and started telling the person on the other end about me. How I was being very rude to other people around me. Not caring for the image I display to others and how I should have had the courtesy to wait until I got home to do whatever it is I did while calling it in.

I didn’t know what to say. She was looking right at me when she said it, so she knew I heard her. Nothing like this had ever happened to me before. Most of the time people stare and have a concerned look on their faces, but this woman, it’s like she hated me.

Then her named was called to the desk and as she walked away, she said, “Finally, I don’t want to catch what she has.” She only saw me as a weak, sick young woman. I had the heart monitor, the face mask and had used an inhaler while around her.

I wanted to so badly stand up to her and asked how she could judge me like she did, especially out loud. Up until this moment, I always felt like the hospital was the one place I wouldn’t be judged or stared at. While having a congenital heart and lung defects makes me different, when I’m behind hospital walls, I feel more like people inside than outside.

I know I’m lucky in that this is my only truly bad experience with staring, but that doesn’t make it hurt any less. I wish I had the guts to explain to her what I was doing, and I hope she never acts like this again. My feelings were hurt badly, and the rest of that entire day it replayed in my mind. She made me feel different in a bad way.

I wish I could say that there’s a big heroic ending to this, but there isn’t. It’s just heartbreaking to me that people judge others because some are different. Judging others when you know nothing about the person or situation isn’t a fair response. I often tell people that instead of staring, ask me a question. I’m quite open with all my health issues. I know I can’t speak for other people with health issues, but I’m sure they feel the same way.

Brittani standing on the beach

The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond to it? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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