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Congenital Heart Defect Awareness: Our Family's Story

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I remember vividly walking into the NICU to visit my daughter Jaycee the day after she was born. I was surprised to see there was a flurry of activity around my baby. Several doctors surrounded her tiny bed focused on a screen connected to something I could not see. A nurse showed me to a chair away from the action where I sat wondering what in the world was going on with Jaycee.

Earlier in the day, several doctors told my husband and me that our baby had Down syndrome. Now there appeared to be something else concerning. Soon, a female doctor broke from the pack and approached me. The young doctor jumped right into telling me that my daughter an atrioventricular heart defect. Essentially, she had a hole in the center of her heart. Half of babies with Down syndrome have a heart condition, but not every heart defect requires surgical intervention.

Within a few days of her birth, she was in congestive heart failure and had pulmonary hypertension. After spending 10 days in the NICU, my husband and I took Jaycee home.

Bringing home a newborn in heart failure meant our lives were a little different. Giving medications became part of our daily routine. Getting these medicines down a newborn with an easy gag response and reflux proved difficult. Then there were the feedings, which were exhausting for both of us. Her suck was not strong at all. She tired easily and slept nearly all the time. Jaycee was overall so weak and tired that she literally could not cry. Instead she had a weak little noise that we determined was her version of a cry. At home, we had to find a balance between showing off our newborn while limiting her exposure to germs.

When Jaycee was 3 months old, she had reached nine pounds, which meant she was big enough for her open-heart surgery. This was a bittersweet moment for my husband and me. We were ready for Jaycee’s heart to be fixed, but we were scared of all of the rare but possible side effects from surgery. Handing your tiny baby over to a team of doctors knowing her body would be forever marked from the day was a moment we worried about since we had gotten her heart diagnosis.

Despite our fears, Jaycee’s surgery went absolutely perfect. We were amazed at how a little body can recover from a major surgery. The capabilities of doctors were astounding for us hospital newbies. The idea that our daughter’s chance at life was only due to the ability of these men and women committed to saving the lives of every child was not lost on us.

Today, Jaycee’s heart is no longer our biggest concern, but it took awhile to get to that place. She did need another heart surgery at age 2 to fix some of the leaks in her heart left from the first surgery. Jaycee also had two heart ablations for Wolff-Parkinson White syndrome, which caused a tachycardia at age 5. Now Jaycee has yearly cardiology appointments to monitor her leaks and slightly elevated pulmonary pressures, but the doctors are not anticipating any more surgeries.

With this month being Congenital Heart Defect Awareness Month, my husband and I would like to share the story of our daughter’s survival. When a heart diagnosis is made, there are many unknowns. We were worried about our daughter’s future and life. We are grateful those days are behind us. Our Jaycee is now a vibrant 11-year-old with energy and an ability to scream and cry.

Follow this journey on A Special Purposed Life.

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A Mom's Plea During Congenital Heart Defect Awareness Week

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Today is February 10.

Smack dab in the middle of Congenital Heart Defect Awareness Week, which runs from February 7 to the 14.

My 6-year-old son, Bodie, was born with a complex congenital heart disease (CHD) called hypoplastic left heart syndrome, or HLHS. The structures on the left side of his heart didn’t form correctly. In his case, he has no left ventricle at all. His condition is incompatible with life. But thanks to modern medicine, he has been able to have life-saving open-heart surgeries to reroute his blood flow, to make his one ventricle do the job of a two ventricle heart. For most kids with HLHS, the surgical route includes three open-heart surgeries. In my son’s case, his journey  has included five open-heart surgeries, a pacemaker and an additional heart surgery through his back.

Yes, my 6-year-old has had six heart surgeries. One for each year of his young life. And six heart catheterizations and more hospital time and other medical procedures than most adults. And yet, he lives. He loves. He laughs. He is a bright and silly first grader who is discovering the joy of reading and loves math. He goes to karate twice a week. He loves Legos and “Star Wars.” He is an ordinary kid living life amongst extraordinary circumstances. He does the important task every day of making lemonade when life has most assuredly given you nothing but lemons.

So, during CHD Awareness Week, I am usually asking people to wear red, spouting CHD facts and sharing my son’s story, of how much he has overcome. But this year is different.

In November, Bodie was diagnosed with sudden severe heart failure. He is now struggling to keep up. His heart is tired. He doesn’t have the endurance of his peers. He cannot keep up on the field, or on the playground. And there are days it really bothers him, days where he tells me with tears in his eyes “I just want to run without getting out of breath.” Since then, we have done a heart catheterization,
changed up medications and held our breath. We are waiting, hoping, willing his heart to get better. It has not yet. If it does not, we will have to begin the arduous and painful task of having him evaluated for a heart transplant. And hope and pray that he is a candidate. And hope and pray that a heart becomes available in a world where there are already not enough organs for the people who desperately need them. And hope and pray that he is one of the success stories, where a new heart gives him a whole new lease on life.

And then we have to explain to our 6-year-old that yes, someone else, another child, will have to die for him to live. Of course, they will not die so that he can live. Another child will pass, and that family will make the selfless decision to donate their beloved child’s organs. And that decision will have to be made for my son to live. Two very different things. But so hard for a child’s mind to grasp.

This journey is hard. So, so, so very hard.

So this year, I don’t want to talk about CHD awareness. I don’t want to ask people to wear red. I don’t want to spout CHD facts and to make sure people are aware of the symptoms. CHD already consumes my every waking thought (and a lot of my sleeping thoughts, if I’m being honest). We are in a constant state of worry and stress because of CHD. I don’t want to focus on it any more than I have to.

But then I remember.

My son’s existence depends on CHD awareness. He is depending on advances in science and medicine.

Advances that mean injecting his own stem cells into his failing single ventricle heart to regain heart function.

Advances that mean developing and testing effective devices to bridge failing single ventricle hearts to transplant. These devices will keep their bodies healthy while waiting on that perfect heart.

Advances that mean bringing ghost hearts and artificial hearts to the market so that no one has to pass away waiting for an organ. And no child has to be told that another child has to die for them to live.

Advances that mean extending the life of transplanted organs, so that the decision to get a heart transplant does not mean having the same conversation and having to retransplant 10 years later.

So.many.advances. And advances only happen when people are aware, when they
donate funds to critical organizations that are pushing this research forward.
Organizations like the Children’s Heart Foundation, The Mayo Clinic, Children’s
Hospital of Philadelphia and Boston Children’s Hospital.

So, this year, this is my CHD awareness plea. So much of CHD awareness is about the signs and symptoms of CHD. And those are all important. But, frankly, I’m in the thick of living with CHD right now and I don’t have the energy for that right now. That’s a different blog post. Today, my family is fighting CHD tooth and nail. And it feels like we’re losing a little bit of ground each day. And that’s a hard space to be in. So today, I have the energy to stand strong, and to hug my son, and to keep making lemonade with him. And to spread awareness so more people know, and more people fund, life-saving research.

That is it. That is all I want for CHD Awareness Week this year. More research. More funding. More chance at life for my Bodie and for so many kids like him.

mom and son holding red stuffed heart

Bodie turns 7 next week. All we want is more birthdays with our sweet little boy. And all of the kids like him. Ordinary kids living amongst extraordinary circumstances.

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Carrying the Weight of 'Survivor's Guilt' as a Man With Congenital Heart Disease

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Survivor’s guilt — who would think of that? For me, I always I think of survivor’s guilt when you hear stories of September 11th or a plane crash that very few get to walk away from. But what about congenital heart disease (CHD), the birth defect that is more common than any other on this planet. The guilt can be intense because with CHD there is often enough time between birth and death to give guidance and hope to those patients or parents who are suffering.

But what do you say to a parent who has suffered immeasurable loss after you tried to give them so much hope? How do you justify in your mind that you are still alive even though your condition seemed worse than a child who just passed and you are in your 30s? How can we, being the older generation, be the light at the end of the tunnel when so many only get a glimpse of the light?

Congenital heart disease is a killer. The number one birth defect related killer. Maybe that is why many of us feel so empty all the time. I had too many times when I don’t know what to feel when a child with CHD passed away, and unfortunately, there are much more to come. I felt it for my sister who passed with a similar heart defect to me while my parents were trying to expedite her adoption process to ensure she was on the transplant list. Every loss of life takes your breath away, but when it is a child, it makes it hard even to stand. How can the world be so cruel and why am I still here?

I have never quantified it until my good friend posted about another CHD child losing their life and how hard the survivor’s guilt was on her. It was a quick slap across the face — that is what I had been feeling. Sure, I grieve for the loss of life, but when it comes to CHD, it is deeper, far deeper for me. Why? Why am I the one who wasn’t supposed to make it and did? Why did the baby of the family I was trying to give hope to pass? Why did the child that was healthier than I already go through the same amount of operations as me, losing parts of his limbs, even though I am 33 years older and still have all my limbs?

Has medicine not advanced as we thought? Or is the information we have as patients and parents not so evident that we can make informed decisions? In the case of complex CHDs, it is both, but we can work to change how and where our kids or we get care. It is a complex world, and often there are many obstacles in our way including our government and private insurance companies. But we must stand up and fight for our care and seek to educate those who just entered the arena of CHD. I believe those are the people we need to reach first before they get inadequate care, before their
child is one of those that we grieve.

The hospital you go to matters! Volume matters! Public reporting about surgical outcomes matter! Survival rates matter! Don’t settle for what is convenient settle for the best care you can get, period! I will fight until I die to get this information and knowledge to all. I commend the PCHA on their efforts to get us the data we need; it is information that every parent and patient should be seeking out.

I never knew how to define my feelings until I read a post from a dear friend — I hate survivor’s guilt. It takes me down like no other. Even if the patient is alive, when you see their quality of life significantly diminished beyond repair, there is still guilt present. I don’t know how you define it, but it doesn’t matter. We need more of everything in the CHD world! Everything from funding, research, support, data and reporting, transparency, insurance coverage, and access to any hospital we choose. Until we have all of those, we won’t stop fighting. Survivor’s guilt has no end, and for many of us, it began before we ever knew what it was. But I can promise you it will be one of many motivations for me to make changes in the CHD world.

While I carry a heavy weight of guilt, I also carry those lives as motivation to keep me moving forward as a CHD advocate. I will fight for those we lost and those that live until the day I get called home, I can promise you that.

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To Those Who 'Never Would Have Guessed' I Have a Heart Condition

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“I would have never guessed. You look so normal.”

When I meet someone new, I never tell them right away that I have a heart condition because I never want to be labeled as “sick.” A lot of times when people label you based on first impressions, it is hard for them to see you as anything different (Trust me on this one. I had a former boss who questioned my ability to work when I disclosed my health circumstances). It is only when I feel a sense of comfort and trust do I disclose my “sickness.” Even then, I only tell them the brief version of what I live with.

I was diagnosed with a heart condition when I was six weeks old. I am missing my right ventricle and I have had three open heart surgeries. For the most part I am fine, just a few doctor appointments each year. I will let people know if there is an emergency or if I need anything.

Every time I do share with people about my heart complexity, they are so taken back by the fact that I “look” and “act” normal. I get this wide-eyed stare in disbelief, followed by statements such as, “I would have never guessed” or “You look so normal.” I usually brush it off casually and downplay my heart condition, but what I wish I could say to them is this:

I may look “normal,” but my life has been anything but normal. With all of my “near death” incidents I have an irrational fear of death that never seems to truly go away. When I have an episode of atrial flutter or I have to take a break from exercise, I wonder if my time is coming to an end. I guarantee that when we have been in the same room, I have had heart flutters that literally take my breath away, but of course I would never let you know.

Life has been hard but I am a fighter. I will fight for everything that is joyful in this world. I receive life as a gift and continue to challenge and push myself. Please don’t feel sorry for me, because all these challenges have given me a rare perspective on life. We only have one life and we do not know when our time is up. Because of this mindset, I am going to soak up every sun’s ray, laugh until my abs hurt, love unconditionally, and tackle any goal I put in front of myself.

I am uniquely designed and able to live my life to my fullest.

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Paula Miller - Adult Congenital Heart Association

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Talking congenital heart disease with Paula Miller from the Adult Congenital Heart Association.

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When People Ask If My Son With a Congenital Heart Defect Has Been ‘Fixed’

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Is he fixed? That’s the ongoing question we get when someone we know asks about our son Elijah’s heart condition. The simple answer is no; he is not “fixed.” He will never be fixed. He was born with a congenital heart defect (CHD) called Tetralogy of Fallot. You cannot just “fix” a congenital heart defect.

When Elijah was born, his heart wasn’t functioning properly due to structural abnormalities. There were four in total. You can correct them, but you can’t fix them. Elijah will always be under the care of medical professionals, and he may need more surgeries. In fact, it’s highly likely he will.

Yes, he may look well and happy, but no, he is not “fixed.” You cannot “fix” a heart. His heart — no matter how many surgeries — won’t be the same as someone who wasn’t born with CHD. It won’t work like it either, so please stop asking us. It’s just an ongoing reminder that my son has a heart condition that will affect him for the rest of his life.

I appreciate those who take an interest in Elijah’s condition and ask questions. I’m happy to educate them about his condition. But please choose your words carefully. As the parent of a child with CHD, I’ve spent days upon days wishing there was a way to “fix” my son. It’s just a kick to the stomach that no, I can’t fix him. No one can.

To be a parent, you should be able to do whatever you can to stop your child from being ill, from hurting and to make them better again. I couldn’t do this, and it added to my guilt.

Elijah was very lucky. In the first hours of being born, he had “dusky episodes,” where he went blue/purple for a few seconds and then back to normal. He only ever had one episode at home, which was due to bronchiolitis.

Elijah looked like any baby of his age, and he didn’t get ill that often, either. Of course, it made me slightly more protective, and we kept him in our room until after his operation. I didn’t put him in nursery or leave him with many people. Immediate family and friends were briefed on what to do if Elijah had an episode, but truth be told, it never happened. It wasn’t until after the operation that I realized the difference his color. He was pink and healthy. It was almost instantaneous.

The operation patched the hole in Elijah’s heart, but unfortunately the narrow valve couldn’t be saved and was removed and replaced. And some of the thickening muscle was cut back. Depending on how he grows, Elijah may need more surgery to replace the valve again. So while he may be repaired for now, he isn’t “fixed.”

I find it hard as a heart mom to both appreciate someone’s concern and then not be offended by it. But I do resent being asked if he is “fixed,” as if he were a faulty electrical appliance that has been sent away to be repaired. He’s a little boy, not a vacuum cleaner, and has a lifelong heart condition that can’t be fixed. CHD will never go away.

I like to think of Elijah’s scars as a mark of the amazing journey he’s been on. His heart is a patchwork of strength, but it does always bring me back to the realization that he has CHD. No matter how many good days pass (appointments have been reduced to just once a year, and he is passing reviews with flying colors), he still isn’t “fixed.” He never will be. So before you ask, please stop and think about what you are saying. There are so many other ways to ask, and so many ways we as heart parents can answer.

To make everyone more CHD aware, we need to make it more accessible. Let’s talk about it. Start a conversation and begin to educate others about the effects and symptoms of CHD.

We also need to make it known what not to ask. After all, this is our lives as heart families, and we have a right to voice our opinions about the one subject matter that we will be talking about for the rest of our lives.

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