Hypoplastic Left Heart Syndrome

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Hypoplastic Left Heart Syndrome
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    Community Voices
    Community Voices

    Do you celebrate Surgery Anniversaries? #Disability

    <p>Do you celebrate Surgery Anniversaries? <a class="tm-topic-link mighty-topic" title="Disability" href="/topic/disability/" data-id="5b23ce7700553f33fe991445" data-name="Disability" aria-label="hashtag Disability">#Disability</a> </p>

    Embracing Your Child's Birth Defect

    For every parent of a child with a birth defect, there is a before and an after. Whether the line is drawn in the darkness of an ultrasound room, in the silence of a NICU nursery, or in the bustle and shock of an ER, it is there for each one of us … dividing what was and what is. My line appeared suddenly, seven years ago, when a chatty sonographer stopped talking and started measuring. Humans are supposed to have four heart chambers, apparently. Who knew? Most people like to keep their great arteries untransposed, as well, but my son Malcolm has always done things differently. He doesn’t spend a lot of time stressing about little stuff, like his Hypoplastic Left Heart Syndrome. There are more important things to think about. Trains. Hot Wheels. Minecraft. Like most parents who have unexpectedly had to deal with their child’s birth defect, I spend a lot more time considering the minutiae of his strange, weird, wonderful body than he does, and that’s the way I want it. He doesn’t need to waste any mental energy worrying about medical breakthroughs, or sitting down with school administrators to craft 504 plans. He bears the physical burden right now, but I’m holding onto the mental one for him. We moms of medically fragile children have strong arms and large vocabularies. We have to. And before? Honestly, I can’t remember before. All that has happened since that before-and-after line was drawn has colored everything on the other side anyway. Not in a bad way. It’s just that when your life completely upends and the kaleidoscope finally settles, you start doubting the staying power of that other paradigm anyway. For me, living with the reality of Malcolm’s birth defect has been more about reality solidifying than reality crumbling. Life has always been unpredictable, out of my control. Love and suffering have always gone hand in hand. I just didn’t know it, yet. Now I do. I don’t regret much about the before, either. I like who I am now. I like who I’ve had to become. Before, little things bothered me. Before, I knew I would die if something bad happened to me. Now, I know my own strength. I can survive a lot. I like who my son is, too. What most people don’t understand is that you cannot separate a person from what they’ve gone through. There is no Malcolm unless there is also congenital heart disease, and 20 surgeries and pain. Almost from conception, his heart has been wonky. So what? That’s part of who he is. The most important thing new parents should understand is this: normality is a myth. There are no “normal” kids. Each one is different and divergent. Health itself is largely mythical, too. What makes one child more healthy than another? Physical perfection isn’t everything. There are ways for a kid to be healthy that have nothing to do with the fragility of his or her body. Health can be measured simply by how happy a child is, or how loved they are. Health can be assessed by how supportive the family is, or how many opportunities the child has to grow and learn. Malcolm’s happy temperament and optimistic outlook have been polished and refined by more hardship than most adults experience in a lifetime. His scars are but battle trophies; his soul is whole and beautiful. He is a light that shines for all to see, because his experiences have made him transparent and open. I know how to value a gift like that. For every parent dealing with a birth defect, there is a before and after. Let go of the before. Living with your child’s condition is hard, but it is worth doing. Embrace your child, defects and all, just as they are. Embrace the after.

    Hey, World: My High-Risk Child Matters in This Pandemic

    I think we can all agree that a year and a half into an unprecedented viral pandemic, nobody is exactly thriving. Every human on earth is bearing the burden of extra restrictions, extreme isolation, and increased fear and grief. The suffering has been widespread and universal. No one is exempt; no one has been unscathed. As a species, we’ve seen better days. Let’s face it; things are awful. But for some of us, this last year has been a little worse than awful. If, like me, you have a child who is at high risk for serious illness or death from COVID-19, the normal angst associated with a global catastrophe is keyed up to a frenzy by specific anxiety, for a specific little person. In my case, that little person is my 7-year-old son Malcolm, who has hypoplastic left heart syndrome and a number of other congenital heart defects. Because of his condition, and the toll of more than 20 surgeries, his heart is damaged, his lungs are damaged, and his liver is damaged. The coronavirus would have a heyday with him, and invite all its friends to come along. Like most people over the course of the pandemic, we’ve been staying in a lot, wearing masks, and taking lots of precautions to avoid becoming ill or spreading that illness to others. Until the vaccine was available to adults, my husband and I didn’t even really go to the grocery store much. The kids haven’t gone anywhere. Malcolm and his two sisters have essentially been living like mole people. We’ve kept them underground, where it’s safe. Unfortunately, it’s also dark and musty underground. My husband and I started venturing into the world again once we were vaccinated, but the kids have had to stay put. At this point, we’ve all got cabin fever. We’d like to come out now. We need your help. Please keep wearing masks. Please just get the vaccine. One of the worst parts of this whole pandemic experience, shared by everyone that is at high risk from the coronavirus, or who has loved ones at risk, is the message that we don’t matter. We hear loud and clear the statements, uttered aloud or silently implied, that the virus is welcome to pick off the weak, and the sick, and the old — just as long as it doesn’t inconvenience the normal people. It really hurts. Know this. Every time you complain on Facebook about mask mandates at school, you tell me that your child’s discomfort trumps my child’s death. Every time you explain that you don’t need the vaccine because you’re healthy and young, you make it clear that your only loyalty is to yourself. Every time you pull your mask down off your nose in the Costco because you’re feeling a bit claustrophobic, you are carelessly signaling that the suffering and death of others is just not your problem. I know everyone is suffering right now. I understand that the issue of vaccination is fraught and scary for many. I get why this is difficult and weird. Personally, I hate wearing a mask. If I wanted to smell my own breath all the time I would just live under a blanket. I’m not saying any of this to be a dramatic jerk, or to throw stones. I’m saying this because I think the earth is largely peopled by good humans who don’t always realize the effects of their actions. I’m saying this because I want my kid to grow up. I’m saying it because I want your grandparents to be around as long as possible, and I want your diabetic friend to make it through the next year. We’re all connected, every single one of us. The world gains a little something with every new birth, and loses something with every death. The weak and the sick matter just as much as the healthy and the strong. I don’t expect this to change the minds of many people. And I’m still going to do my best to protect you, even if you don’t want to protect me back. No matter what your thoughts about the reality or unreality of this pandemic are, no matter what your feelings about vaccination have been, no matter how strongly you feel about personal rights, I hope we can all agree on one thing: human life is precious. Every one of us counts.

    Community Voices
    Community Voices

    How did you feel about your transition of care from a pediatric cardiologist to an adult cardiologist? #CongenitalHeartDefectDisease

    <p>How did you feel about your transition of care from a pediatric cardiologist to an adult cardiologist? <a class="tm-topic-link mighty-topic" title="Congenital Heart Defect/Disease" href="/topic/congenital-heart-defect-disease/" data-id="5b23ce7200553f33fe990680" data-name="Congenital Heart Defect/Disease" aria-label="hashtag Congenital Heart Defect/Disease">#CongenitalHeartDefectDisease</a> </p>
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    3 Things To Know Before Your Child Has Open-Heart Surgery

    Your child is going to have open-heart surgery. You are going to be just fine. Trust me, no one wants to be in your position — it’s heartbreaking. But many of us have gone before you, and we know what it’s like to feel helpless and scared, and to do the hard thing anyway. You are stepping out into the darkness, but you are not alone. I have found the following advice helpful in my own journey as a heart mom. I hope it helps you too. 1. You Can’t Prepare. It’s tempting to try to get out ahead of any potential issues by preparing yourself for the surgery and hospital stay ahead of time. Don’t do it. Now, don’t get me wrong, you’re absolutely going to want to have a lot of Hot Pockets stored away in the ol’ freezer. Pack chocolate and trashy magazines, by all means, and lots and lots of underwear. However much underwear you were thinking of packing, triple it. Then triple that. Then triple that again. Then take out stock in Hanes (I am deadly serious). You won’t have a lot of time to, you know, shower. Or comb your hair. You shouldn’t also have to put up with crunchy underwear. But don’t kid yourself into thinking you can prepare emotionally. There is nothing that can brace you for the unbelievable pain of that first glimpse of your child after surgery. No amount of factual knowledge can prepare you for that emotional trauma. I’m in a position to know; I’ve done it three times so far. The heartache is unbearable and it never gets easier. Never. You can’t shore yourself up against that pain right now. Don’t even try. Don’t bother to prepare for the actual surgery or hospital experience. But do spend time preparing yourself for the reality that life will still be good when it’s over. 2. You Will Mess Up. Yeah, sorry. You will mess up. It’s going to happen. You will lose your temper at that one snotty charge nurse and ugly-cry behind the privacy curtain afterward. You will snap at your partner. You will lumber around like an oaf and might accidentally step on your child’s chest drainage tube, potentially causing other problems. And then you will yell hysterically in the direction of your child, “I’m sorry! I’m sorry!” before the Rapid Response team politely asks you to step aside because they kind of need to do an x-ray, like, right now (Not me. I’ve never done that). The point is, you are a human — in a highly stressful situation — and you aren’t perfect. You are going to lose your mind not once, but many times each day. It’s OK. Cardiac doctors and nurses are used to dealing with parents who are grouchy and sleep-deprived. Give yourself a break! And while you’re at it, give your partner and your kid a break too! They are just as scared and tired as you are. You can even give that snotty charge nurse a break. She’s the living worst, I know, but she’s just trying to keep your kid alive. You’re all in this together. 3. The ‘Old You’ Will Die. I know. This is not what you expected. Again, sorry. But a part of you may die the minute the anesthesiologist wheels your baby away in the hospital bed. The person who walked into that pre-op room is gone forever. You are someone else, now. You will ache the first time the nurse calls with a surgical update. And again, when the phone rings with the second update. You will die from heartache when you see your little one in the PICU, breathing only by the grace of God and some skillful intubation. You’ll die again when they wake up and croak for juice or their ba-ba; every time they cry from pain, or ask when they can go home. But you know what? Dying’s not so bad. The “you” that is reborn is always a little stronger and a little kinder. Heart parents are superhuman. No one can die and be reborn that many times without moving up the evolutionary chain several notches. You and I are made of strong stuff. We may be weepy, hangry, ugly-criers, but we are made of Teflon. Your child is going to have open-heart surgery. And you are going to be just fine. I’m sure sorry that you have to join our little club — the Parents-Who-Do-Open-Heart-Surgery club — but we’re glad to have you on board.

    Radically Accepting Your Baby's Congenital Heart Disease Diagnosis

    If you are reading this, it’s because you and I have something in common. At some point, both of us went into an ultrasound room feeling great and came out sobbing. Your child, like mine, has been diagnosed with a congenital heart disorder. I’ve been dealing with the reality of my son Malcolm’s diagnoses for almost six years now. When it comes to heart defects, he’s the whole package. Never one to do anything by halves, as I realized during his terrible twos and threes, he came to us with hypoplastic left heart syndrome, double-outlet right ventricle, transposition of the great arteries, and some other fun side issues. In layman’s terms, his left ventricle called in sick, so his pulmonary artery joined up with the right ventricle and played musical chairs with his aorta. I’ve learned a lot by being a heart mom. I’ve had to. But the most important thing I’ve internalized is the concept of radical acceptance. Primarily a term used in therapy, radical acceptance is simply the act of agreement with reality. It’s being willing to say, “ Hey, reality. I see you over there.” To radically accept your baby’s diagnosis, you must first believe that it is true and cannot be changed. Then you must let go of feelings of unfairness, and what-ifs, and “ this can’t be happening.” You don’t have to be best friends, but you do have to shake hands with the Truth, and agree not to bicker with it. Believe me, more than anything else, your ability to radically accept your child’s situation will inform how both of you handle the first year of life and every year after that. Here are my best tips for achieving radical acceptance of a tough diagnosis: 1. Don’t Pick Fights With Reality It’s tempting, after the first initial shock, to slip into a numbing state of denial or an angry vendetta against the universe. But I advise you not to pick a fight with reality. You will lose, every time. Don’t get me wrong! Reality has nothing against you. It just is what is — a solid brick wall. No matter how many times you throw yourself up against the wall, or try to walk through it like it isn’t there, it won’t budge. It literally can’t. If your goal is to knock down that wall, the only thing you will hurt is yourself. The grief and sadness that go with a new diagnosis are hard enough. Don’t give yourself a concussion or a lacerated kidney in the process. The easiest way to begin accepting reality is to deeply understand that what’s happening to your child isn’t personal, at least in the way we normally think of it. My son’s left ventricle didn’t just refuse to appear. It isn’t locked in its dressing room until we bring it the right kind of bottled water or a bigger trailer. His pulmonary artery isn’t nursing a bitter grudge against me because I killed its father. Nobody in a black balaclava slipped unnoticed into my womb and took a hole-puncher to Malcolm’s heart, just for kicks and giggles. Perhaps more importantly, reality isn’t personal in the sense that none of this is anyone’s fault . There is just no version of reality in which Malcolm’s great arteries are upside-down because I ate some bologna (OK, it was a lot of bologna. Don’t judge me). In fact, no amount of cold-cuts, wine, hot-tubbing, horse-back riding, or caffeine could have made his heart grow wonky. And not even a dump truck of folic acid could have prevented him from having a major birth defect. Human development is weird, and almost completely out of our control. Sometimes, organs get plumbed-in incorrectly, or fingers or toes are missing. Sometimes you get the straight-haired model, even though you specifically asked for the curly-haired one. Babies don’t come with invoices. We can’t return them if they’re not in “perfect” condition; we have to take them as-is. Thank God for that. Who among us would be here if perfection was required for life? I believe that love is the meaning and ultimate goal of the universe, and that makes it easier (though not easy) for me to radically accept all aspects of life, good and bad. But you don’t have to believe in a higher power or a universal order to practice radical acceptance. Just … let reality be what it is. You don’t have to like it, but you don’t need to fight it or ignore it either. Let it be. Respect it for what it is: an immovable fact. The price of non-acceptance is always pain. 2. Acceptance Isn’t The Same As Giving Up To some people, acceptance of a scary birth defect is the same as indifference or not caring. But that’s not the case at all. Radical acceptance always starts with the acceptance of reality, just as it is. But it does not require you to maintain that reality in its current form! If anything, fully accepting your child’s diagnosis allows you to advocate for them in a more constructive way. Educating yourself about cardiac anatomy or exploring the medical options available to your family may seem impossible right now. But trust me — in this case, knowledge is power. Understanding what you and your baby are about to go through (and why) will give you a much-needed sense of agency. You didn’t get to choose this path, but you can darn well choose how you walk down it. Don’t be the parent that lays down on the side of the road to die. Your baby does not need you to reenact the Little Match Girl. They need you to run this trail like a boss. In other words, fully accepting your situation is not enough. You must act on that knowledge. Y ou can’t change what is, but you can always affect what will be for the better. 3. Acceptance Will Come Easier For Your Child Achieving radical acceptance will be an agonizing process for you, but it’s critical to remember that your child will probably not experience the reality of their situation the same way you do. My son had his first open-heart surgery at three weeks old. He’s five now, and strangely, he doesn’t spend much time reminiscing about the good old weeks, pre-zipper-scar. To him, being short of breath is normal. Scars aren’t even on his radar. X-rays, blood draws, and echos are just his average Tuesday. Your baby will accept his or her situation fully, right away, no questions asked. Because humans are adaptable. And because toddlers aren’t bothered much by existential crises. Heart kids are just fine with who they are, thank you very much. They don’t need anyone feeling sorry for them or struggling to accept what, to them, is everyday life. They know how to live gracefully with congenital heart conditions because that is their birthright. So right now, as you are processing this difficult diagnosis, try not to spend time worrying about your child or their quality of life. Your baby will go through a lot. But they will thrive, developing unusual bravery, compassion, and resilience as a result of the suffering, not in spite of it. Heart kids are the best human beings, period. Focus all your energy now on how you can radically accept your child’s congenital heart defect. Once you make peace with what is, you will be more able to positively affect what will be. What your baby needs more than anything is a parent with her head in the game. Radical acceptance isn’t easy, but it is worth achieving.

    What My Congenital Heart Defect Has Taught Me

    I’m pretty open about my heart defect. It’s obviously a big part of my life, and I guess I’m just the type of person who talks openly about stuff like that. My heart defect is such a big part of my life, actually, that it comes up pretty easily in conversation. Usually, I just say something along the lines of “…with my heart” or “…because of my health,” and then people ask, “what’s wrong with your heart?” and I get to say my favorite thing ever. Seriously, the feeling I get when I say this one line is probably evil, but it makes me really happy. When people ask me about my heart, my first answer is, “I only have half a heart!” Without fail, I will watch the person I am talking to struggle to keep their mouth closed. Of course, I don’t just leave them at that. If they ask for more detail, I give it to them. “I was born with a form of hypoplastic left heart syndrome. Usually, people with this CHD have four chambers to their heart, but the left atrium and ventricle are smaller than they should be, but the left side of my atrium and ventricle just didn’t grow at all. Because of this, I only have one valve, and it doesn’t work all the way. I’ve had a lot of surgeries to help, but I’ll never be ‘fixed.’ Also, my atrium and ventricle don’t talk a lot, so I have a pacemaker.” This is the part where the person I’m talking to tells me that I am, “soooo strong.” It is such a kind thing to say — that I am strong and can get through it. But here’s the deal: I am such a baby. I am a wimp. I don’t enjoy echos (sonograms of my heart and blood flow) because the tech has to push on my scar and my throat. I don’t enjoy getting labs done because needles have messed me up! No matter how many people tell me how strong I am, I don’t feel it. My heart defect hasn’t taught me strength or that I can do anything, because every time I’m faced with a new CHD challenge, I feel helpless. My heart defect has taught me friendship, not strength. It has taught me that when you can’t be strong enough to face it, your friends can carry some of that weight for you. It will still be heavy, but you won’t be alone. My heart defect has taught me courage, not strength. It has taught me that when you can’t be strong enough to do it confidently, you can still do it. It will still be scary, but it won’t be impossible. My heart defect has taught me hope, not strength. It has taught me that when everything sucks, it will get better. It will still suck for a while, but not for forever.

    Community Voices

    6 facts about CHD

    <p>6 facts about <a href="https://themighty.com/topic/congenital-heart-defect-disease/?label=CHD" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce7200553f33fe990680" data-name="CHD" title="CHD" target="_blank">CHD</a></p>
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