6 Things You May Not Know About Moms of Kids With Congenital Heart Defects

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My journey as a “Heart Mom” began in 2010 when our daughter was born with a serious congenital heart defect (CHD). Within hours, she was transferred to a cardiac intensive care unit in a children’s hospital in another state. She spent her first 66 days of life in the hospital, and by the time we got to bring her home, she already had one open-heart surgery under her belt. By 8 months old, she underwent her second open-heart surgery, and by 20 months we were told it was time for a third. Luckily, we found a doctor who was able to do a procedure that would buy us time before another surgery was needed. Today, at 5 years old, she is still doing great, although we know surgery is in her future.

In 2015, I gave birth to our son. All prenatal scans showed a healthy heart, and we were thrilled. However, at 2 months old, we found out that he, too, was born with two congenital heart defects. Although not as serious and emergent as our daughter’s, they are CHDs nonetheless. My journey continues.

The journey of a Heart Mom is filled with ups and downs. Unless you have been there, you probably don’t know what it’s like. In honor of American Heart Month, which concluded recently, I thought I would take some time to try to explain what this is like from my experience. Below are the top things I feel you should know about being a Heart Mom.

1.  There are a lot of us. 

CHDs are the most common birth defects. Approximately one in 100 children is born with some form of CHD. That’s a lot. That means that most likely someone in your group of Facebook friends is affected by a CHD. Possibly more than one. They could be a parent, grandparent, sibling, friend or even have a heart defect themselves. I have learned that in my relatively small group of 164 Facebook friends, there are two other Heart Moms. I did not know how common this was until it affected my family.

2.  I get angry sometimes.

Although I’m not proud of it, I get mad sometimes when I think about the congenital heart defects that affect my children. As cliche as it sounds, I have thought “Why me?” It was really bad shortly after my daughter was born. It wasn’t fair. We are good people. Why was this happening? I felt cheated. I could not hold my daughter at all until she was 5 days old because of the ventilator, tubes and wires. I could not nurse because she needed to be tube-fed to save her energy. I couldn’t have the experience I was “supposed” to have. As time has gone on, these feelings have been much less frequent, but I must admit they still flare up at times.

3. We have an unspoken, unbreakable bond with other Heart Moms. 

I am very thankful I know some Heart Moms in my already-existing circle of friends. It helped so much when I discovered I wasn’t alone. There are so many unique and complicated feelings that go along with having a child with a heart defect. Although I am truly and forever grateful for the support of my other friends, there is no one who can “get you” like another Heart Mom. They understand how you feel without you having to explain the intricacies of your emotions. They know the fears you are too scared to verbalize. They just get it. When I can’t express my feelings with words, I am grateful to know I have people who understand anyway.

4. The journey is never over. 

My children’s congenital heart defects are lifelong. There is no “cure.” Even if your child doesn’t need any more procedures, there will always be cardiologist appointments that will inevitably dredge up some old memories and new fears. As I said earlier, my daughter had a procedure done in 2012 that delayed the need for her next open-heart surgery. Now in 2016, she is still doing well and has surpassed the doctors’ estimate of when surgery would be needed. We were told 18 to 24 months, and we are now at 37 months and counting. Because of this, there is always a running clock in my head knowing there is more to come. With my son, we are in wait-and-see mode until his follow-up appointment in six months. At this point, we don’t know if he will need medical intervention or not. The waiting can be the hardest part.

5. Our children are our heroes. 

Our children are amazing. My daughter has gone through more in her short life than many adults ever do, and she is still the happiest kid you can imagine. She barely cried as a baby despite everything. She wakes up each day smiling like it’s Christmas morning. Our children are resilient and they are fighters. If anyone is an inspiration, it is our “Heart Heroes.”

6. We wouldn’t change a thing. 

Of course we would do anything to take away any pain or struggles our children experience, but they are in our lives for a reason. My children have changed me and made me a better person. They have taught me so much about courage and strength and love. They have truly made my life and my heart complete. I think they are perfect, and I wouldn’t change them for the world.

To all the other Heart Moms and parents of children with any serious medical condition: You are not alone. No matter your specific situation, there are people who are where you are and who understand. There are people who truly do know how you feel. Don’t be afraid to reach out for support when you need it. This is not an easy journey, and having someone who truly “gets you” can make all the difference.

mom looking at baby in hospital
Mia and her child.

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When I Worry for the Future of My Daughter With a Heart Defect

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I pick up the stethoscope and listen to your heart. You shuffle a bit in your blankets because I have disturbed your sleep, and I freeze not wanting to wake you. When you’re settled back down, I get back to my mission. I adjust the instrument against your chest and listen. I’ll never get over how different your heart sounds from my own. Two open-heart surgeries have changed your anatomy in such a way that your heart now has its own unique way of beating. Steady as she goes, I set the device down and prepare to join you in sleep.

little girl smiling
Erin’s daughter, Ellie.

I think back to all the challenges you have faced. 2014 was a blur of hospitalizations — 16 that year, some for a few days, others for months, some back to back, some within hours of being discharged. 2015 was a blur of procedures: cardiac catheterizations and finally your second open-heart surgery. I remember thinking so clearly there was no end in sight. I remember all the close calls — the moments when things were dire, when your life seemed to be slipping away. I remember the anguished cries of a father right next door who lost his son. I closed my eyes and held your hand to my mouth, kissing it over and over as the tears poured, praying for that family and praying I would never know their pain. All that brought us to this: the stability I had fantasized about when we first found out we were going to be parents. Life right now is so perfect, which has me absolutely terrified. I thought we would never be able to crawl out of the darkness, and now here we are sitting in the sun. It makes me think about how resilient the soul is.

No matter how many times the human spirit is brought to the brink of destruction, it manages to heal and recover. The worst nightmares can fade away into the background noise of life — still there, still present, just muted against all the other sounds. This is what I perceive to be the double-edged sword of humanity: being buried deep in the torment of a moment so dark you can’t see your way past it — but miraculously, incredulously, you somehow find your way out to a place of peace. The other side of the sword is that you let that peace surround you and wrap you up, because for so long you were cold and scared and this beautiful security blanket belongs snug around your soul to salve the pain and despair from the moment before. How could this be a bad thing? I don’t necessarily know that it is. I fear that it is. I fear that within my blanket of security I will forget. I won’t remember how to fight hard. I won’t remember how to be strong in the face of uncertainty. I won’t remember how to be stoic. I worry I won’t be able to hold up my guard with the same force and persistence I did before, now that I have started to let it down.

I tell myself it’s like riding a bike. Sure, your butt is going to be sore for a few days after a long hiatus, but you will ride and ride, and eventually you will break yourself into it again. I am banking on this to be true. Because right about now, after five months of sunny days, I begin to wonder when winter will come. I have seen too much to not know that nothing gold can stay, and yet, I pray every night my world will continue to glitter forever. These days are beautiful, beautiful in a way I could never have fully appreciated before all the darkness. Beautiful in a way that would be devastating to lose.

The question now becomes how long do I permit myself to wonder about the potentially cold days ahead? How many times is it OK for that dark thought to weave into our happy, quiet moments? How do I stop them from invading the peacefulness we have worked and fought so hard to achieve? How do I forge a balance between remembering them, because they are responsible for shaping our lives into these perfect moments, and not allowing them to resonate and echo into every crack and corner, spreading their darkness? The answer is I don’t know. Like so many things in this world, I don’t have a full understanding of how to do it right. In the end, I will make mistakes, but I will learn from them. I will hope that next time it will be better, because I have faith there will be a next time. I will work hard to strike a balance and cherish these days with the reverence they deserve. I will give myself some credit for the battles and challenges already won and know that these lessons will continue to be useful as we parade on.

I watch you smile in your sleep and wipe away a rouge tear before it falls. It’s been a while since I have had to fight and be brave for you, my girl. I hope it will be a while longer, but if it’s not, history shows me I am capable of so much more than I ever thought. We all are. You showed me that. And sure, once we get back on the bike, our butts may be a bit sore, but we will keep pushing, keep pedaling, keep going — because beyond this dark moment we can’t see past, there is hope. And that, like you, has always been worth fighting for.

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Erin’s daughter and cat.

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Photo Series Captures the Pains and Triumphs of Kids With Heart Conditions

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Photographer SheRae Hunter specializes in portraits of babies, but for her latest photo series, she put the focus on children with congenital heart defects (CHD). Hunter met the children and their parents two years ago at a fundraising event in Winchester, Virginia. She later connected with them on Facebook, and after following their daily lives on social media, she wanted to make a difference for the families.

Her mission is to help increase awareness for CHD, and with her powerful images, give a voice to the families who might not be able to speak out. “I can try to see these children how their parents see them — fragile and scarred, but brave and mighty. Broken, but perfect,” Hunter wrote on her website. “I can listen and not judge, not offer advice, or extend pity, but just listen.”

Girl with congenital heart defect
Maggie, age 2, has three congenital heart defects and loves animals, especially dogs.
Girl with congenital heart defect
“You can never prepare yourself… you feel so helpless as a parent, because there is nothing you can do to change it. But then your child shows you how strong and brave they are…” – Maggie’s mother

Children with CHD have abnormally structured hearts and/or enlarged vessels, and the condition ranges from moderate to life-threatening, according to the Children’s Heart Foundation. Most of the children in Hunter’s photos have had multiple open-heart surgeries, and their chest scars are proudly on display.

Jodi Lemacks, National Program Director for Mended Little Hearts, praised Hunter for her work. “It is so important for kids to see other kids like themselves too,” Lemacks told The Mighty. “They often feel different and like no one understands. Seeing others makes CHD feel more ‘normal.’ We often feel like their lives are filled with so many challenges, medical challenges and everyday issues, and to see them having fun makes us feel hopeful — like we can let go of the CHD for a while and just be everyday people.”

Boy with CHD
Colton, age 4, who is “always smiling.”
Boy with congenital heart defect
“[We are] taking the good, no matter how tiny, and the bad, no matter how big, as it comes. Have hope that [he] will overcome this…hope for a miracle.” -Colton’s mother
Girl with Congenital Heart Defect
Emilee, age 3, has had nine open heart surgeries.

Girl with Congenital Heart Defect
“After her last open heart [surgery] I looked at her big, beautiful lips and her cute toes, and I realized they were pink! After 2 1/2 years, my daughter was finally pink! I’d never seen her with pink [skin] and at the moment I fell onto her bed crying tears of joy. I knew she was going to have a longer, happier life than the 3-5 years they gave us…” -Emilee’s mother
 Hunter said the highlight of the project was simply working with the the children, and the harder part came when she opened the notebook filled with the interview responses for the parents. “Every single handwritten interview moved me to tears,” she told The Mighty. “I couldn’t even read through them all at once.”

Boy with Congenital Heart Defect
Anthony, age 3, loves Mickey Mouse and has had four open heart surgeries.
Boy with Congenital Heart Defect
““The best advice ever given to us? ‘You will have your own normal, don’t worry about what other families do. You will establish your own normal…its okay to be a little different.'” -Anthony’s mother

“Most CHD kids do not look sick, but their scars are very real,” a spokesperson for the Children’s Heart Foundation told The Mighty.  “CHDs are the most common birth defect with 40,000 babies born each year. Despite these numbers, CHDs are not well known. Because of this, spreading CHD awareness and funding research are so very important.”

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Madeline, age 5, loves to sing and dance.
Girl with congenital heart defect
“How important God is as our foundation! And we are blessed beyond measure by having Madeline in our life.” -Madeline’s mom

Hunter encourages others to share the images, and to use the #zipperstrong hashtag on social media to keep the conversation going. “This project is my humble and sincere attempt not only to understand the world of these families and children, but to give you a glimpse into their world, that you might seek to understand as well,” she added on her website.

Boy with congenital heart defect
Caleb, age 6, is a ” fun-loving goofball always ready for a good adventure.”
Boy with congenital heart defect
“Our whole world changed, what we once thought of as certainty was long gone. We learned to appreciate every breath and moment…we value each other more…” -Caleb’s mother
Girl with congenital heart defect
Kaylen, age 2, had her first open heart surgery at just 4 days old.
Girl with congenital heart defect
“Handing our daughter off to medical staff…knowing they were going to stop her heart for the procedure..it’s the hardest thing we’ve ever had to do.” -Kaylen’s mom
Baby with congenital heart defect
Isaac, 4 months old, has already had his first open heart surgery.
Baby with congenital heart defect
“When he cries, sometimes I smile because he was on a ventilator for so long, and he couldn’t cry. It’s weird, I know, but I smile.” -Isaac’s mom

All images courtesy of SheRae Hunter / SL Hunter Photography

For more information on CHD, visit Mended Little Hearts on Facebook, and check out their Rock Your Scar campaign, which is currently hosting a photo contest to raise awareness for CHD.

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When You Miss Your Child Even When You’re Next to Her

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“You think you know, but you have no idea what it’s like to miss her.”

Someone said that to me. They were talking about what it feels like to be away from their granddaughter. I have never been away from my daughter really, but that feeling? The feeling of hopelessness in the wake of someone’s absence? I know that feeling very well.

These words were said to me because they were trying to convey the level of their discontent. I held my tongue, and I tried to appreciate the comment for what it was: an expression of how awful they had felt without this person with them. But the comment struck me deep in my heart and left me feeling defensive and angry.

No. I have never been away from my daughter, Ellie, but to say I have never had reason to miss her to a heartbreaking degree is not true. Memories of a hospital room full of beeping machines and IV pumps fill my mind, reminding me of the many times she has been in a drug-induced unconsciousness, making the idea of holding her in my arms a distant and coveted dream. I missed her then.

I recall her playing in a hospital gown in the pediatric surgical waiting room while we awaited the arrival of the people who would inevitably take her away from us; my conscious little girl leaving me to be replaced with a shell of her former self while she recovered from her open-heart surgery. I missed her then.

I flash back to the look on the doctor’s face as he delicately tried to deliver potentially devastating news. The look that said, “We don’t know why this is happening, but you need to prepare yourself for the possibility that she may not come out of this.” I was trying to figure out what he was saying to me when it suddenly occurred to me that what was happening to her was not routine. I was not supposed to see her eyes open and reveal a vacant emptiness that terrified me to my core. There was no Ellie behind those eyes, just a vast, empty space where my little girl had once been. I held her tiny hand in mine and felt so far away from her, I wasn’t sure she could find her way back to me. I missed her then.

It’s easy to forget these moments if you are not her father or me. It is easy to see her as she is now and let these nightmares from the past fade away into oblivion. I wish for that sometimes. I wish I could un-know the terror, the sadness, the desperation. I pray Ellie doesn’t remember any of it. But all the wishing and prayer in the world cannot undo what has been done. I will always remember it and be eternally grateful for the good days we are living and say my prayers every night that there will be many more good days to come. I will remember for everyone who forgets and try to be patient when careless things are said and know that the reminders aren’t as powerful for them.

I will remember those days and feel the familiar ache of my arms… And miss her.

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

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The Christmas We Spent in the Cardiac Ward With Our Daughter

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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.

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What People Get Wrong About 'Happy and Healthy' Babies

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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 [email protected] 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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