Hypertrophic Cardiomyopathy

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    How Teachers Should Talk to Children About Disabilities

    Kara Felton was sitting on a bench at the playground, watching her son, Julian, play. Upon spotting a free patch of wood chips, 3-year-old Julian decided to explore. This, however, was unacceptable to another 3-year-old playing nearby. Little did Julian know, this other kid had claimed that foot-wide section of wood chips for himself, and Julian was an intruder barging in on his territory. Catching sight of Julian in his favorite wood chip patch, the boy did what any 3-year-old property owner would do in such a case: he became visibly upset. Only the two boys and Kara knew exactly what occurred to cause such a scene, but a preschool teacher was on duty and intervened. Not knowing the cause of the boy’s meltdown, the teacher picked him up and pointed to Julian, still playing innocently in the woodchips. “Don’t worry,” she told the tear-filled boy, voice raised for the entire playground to hear. “ You don’t have to be afraid of him, his face is just different.” Julian has congenital generalized lipodystrophy. Despite having a very easy, enjoyable pregnancy, Kara noticed when she gave birth to Julian that he had little subcutaneous fat. He had beautiful, but prominent, eyes and was very muscular. Kara did all she could to build him up—when eating more foods to fatten up her breast milk failed, she continued to think that perhaps she was failing to provide for her son. But it was no use, and sure enough, when he was 4 weeks old, Julian was diagnosed with lipodystrophy. It was incredibly lucky that Julian got a diagnosis. The endocrinologist happened to have a friend whose daughter had a form of partial lipodystrophy, so she knew about the rare condition. Even though Julian now has a diagnosis of congenital generalized lipodystrophy, there are still unknowns, as Julian does not have any of the known subtypes of CGL. Kara and her husband, Nicholas, were relieved to get this diagnosis. Upon getting the information of Dr. Garg, a lipodystrophy specialist in Texas, Kara felt immense relief that she was in contact with a knowledgeable expert. She also thought that Dr. Garg could perhaps answer some other questions. Kara has hemihypertrophy, which means that half of her body is larger than the other side, so she also grew up looking “different.” While looking at Julian’s small, muscular body, she recognized that it resembled the right side of her own body. As it turns out, Kara also has a form of lipodystrophy. Her smaller, right side also has little fat, but her left side’s fat cells provides enough leptin hormone that she did not exhibit any other symptoms. Both Kara and Julian are unknowns when it comes to lipodystrophy: no one else has been found with either of the same conditions, and their genetic makeup is not understood. Knowing how it feels to be different, Kara hopes to create a world in which ‘different’ is accepted and Julian can be recognized as the silly, happy, special boy he is.  But when adults point out children like Julian and use the world ‘different’ and ‘afraid’ in the same sentence, it makes it difficult for young people to accept atypicality. Currently, 4-year-old Julian is living with health problems that he may not fully understand at his young age—like hypertrophic cardiomyopathy, fatty liver, and enlarged kidneys. These are all some difficulties Julian experiences which are not apparent to the naked eye. In order to maintain his health, Julian is on a strict diet: every day he gets 50 percent insulin-friendly carbs, 20 percent protein, and 30 percent fat. Of those fats, about 20 percent are medium-chain triglycerides and 10 percent high-chain fat. Then, of course, there are the physical differences: taut muscles and no subcutaneous fat give Julian his skinny appearance. There is plenty that makes Julian different from the other kids. A growing boy, Julian is just now becoming aware of the things that set him aside from the others at school. The ice cream that his buddies indulge in does not fit into the category of ‘insulin-friendly carbs,’ and he cannot swap his carrot sticks for his friends’ Goldfish crackers. He is already beginning to notice the differences in his lifestyle, and it will not be long before he notices how different he looks from the other kids at school. At this young age, however, such differences are barely noticed. Though there is plenty that makes Julian different, there is even more that make him just like everyone else. He loves his mom and dad and loves to play, tell silly jokes and make silly faces. Kara and Nicholas adore Julian, though this was never the life they expected for their child. “You have all these dreams before you become a parent of the life your family will live” says Kara, “When that dream is changed, it is a heartbreaking, terrifying, and yet a beautiful thing all at the same time. You realize that your new life is filled with these giant questions, these giant unknowns.” As terrifying as it is for Kara to watch Julian grow up in a world that has yet to learn that differences are OK, she remains positive and hopeful by praying and advocating for her son. There is no question that Julian is unlike most of his peers, and he and his friends are beginning to notice these differences as they grow older. There are certainly concerns that Kara has about Julian growing up being so different than his peers, but being proactive and educating others is the key. When Kara looks at her growing son, she does not see a child “suffering” through a “horrible” diagnosis. She sees a goofy, playful kid who is bound to have some extra difficulties in life. At 4 years of age, does a child recognize these differences in Julian’s appearance? If so, do they naturally instill fear? As Kara watched the scene at the playground unfold, she sat mortified as an adult taught a 3-year-old that differences are ‘weird.’  By assuming the other child feared Julian, the teacher instilled that very fear she was attempting to alleviate. By pointing at Julian and using the words ‘scared’ and ‘different,’ she was setting an example for any other child playing in nearby patches of woodchips. She demonstrated that there is an ‘us’ and a ‘them,’ and that Julian fell into the latter category. There was nothing Kara could do to undo this incident at the playground except use it to educate others. With limited resources, Kara took to Facebook to share this story and inspire others to react more effectively to individuals with differences. This is her message: “When a child questions why someone looks different from them, it is not, and will never be OK to tell the questioning child, “It’s OK, don’t be afraid of that child. They are just different, they look different. They are still a child.” It is especially not OK to say this while pointing at the ‘different’ child and speaking loud enough for many around you (including the child) to hear you.This response does terrible harm to both parties involved. When using the word ‘afraid,’ you bring attention to an emotion that may not have been present to begin with. But now the questioning child thinks about [fear] and may start to feel it…you aren’t comforting the questioning child by saying the other child is different either. Without further explanation, the word ‘different’ means something alien, not normal. So now the they are not normal to this questioning child. There is no resolution to their feelings.Also, this ‘different’ child, has likely heard you tell someone else that they shouldn’t fear them. Please think about what this can do to their self-confidence and feeling of worth. Are they a monster, is that why the word scared has come up? And they already know they are different, but to be reminded again and again by an adult who they look to to protect them, is truly heartbreaking.So what should be said? Instead, bring the questioning child over to said ‘different’ child. Introduce them to each other. Point out one has long hair and one has short hair. Point out the different shoes they have on, but that both are cool and acceptable. Point out that one has cool tattoos on their arms, where the other doesn’t, but instead has a cool design on their shirt. Point out other differences, so that the questioning child realizes that everyone is different in every way. Don’t use the word ‘different’ to describe the ‘different’ child as a whole, but illustrate the differences in a positive way.I know navigating the world of ‘differences’ is not easy, especially when dealing with children who don’t understand yet. But please, remember that the ‘different’ party has ears and feelings too. While trying to comfort one, don’t destroy the other. Please do your best to try and be respectful of both parties in these tough situations; you never know how easily your words could save or destroy a life.” It will take a lot of effort to create a world that accepts differences without pitying or fearing them, but as Kara demonstrates, it is possible. This story was co-authored by Kara Felton.

    When My Husband's Heart Stopped From Hypertrophic Cardiomyopathy

    It was the Fourth of July and we were celebrating in style: food, firecrackers — fierce Texas heat. We swam, and drank, and roasted s’mores on the fire pit. The kids ate popsicles. The men smoked cigars and tended to the bar-b-que. I hid my six-week postpartum body behind a mu-mu, making my husband the designated pool parent. It was your typical holiday weekend, your typical holiday day. No one saw the storm coming, nor should we have. Then, the Saturday morning tsunami hit. The day our world stopped and decided to rotate in a totally different direction. I was still in that newborn, post-delivery haze: night feedings, peripads, staples sore in my stomach. I had a rough go since my son’s birth. An allergic reaction to the cleansing agent used for my c-section caused my entire body to break out in hives. I was on multiple medications and steroids to help calm my symptoms. It was the best of times — it was about to be the worst of times. My husband’s an early bird, but that morning he slept in until an impressive 6 a.m. That’s when I heard the thud. The sound of a 200-plus pound body hitting the nightstand next to our bed, which shattered his spine. When I saw his body on the floor, I screamed. But I was the only one making a sound. My husband was silent — and unresponsive. His consciousness came back shortly, but he still was nonsensical. I eventually succeeded in hoisting his body back into the comfort of our bed, but from there things are a bit blurred. He wanted ice for his back; I wanted to get him to a hospital. Immediately. This isn’t my area of expertise, but as a nurse I knew enough to be concerned. A healthy 31-year-old former athlete doesn’t just drop. After some coaxing, and securing childcare for our two babies, we went to a free standing ER. I left with nothing but my purse and wouldn’t return for weeks. It would be a handful of hospital transfers later before we learned that my husband’s heart was three times as thick as it should be. It was an over-worked, tired, prone to stopping heart — and that is exactly what happened — it said it was done. Doctors told us the shock of breaking his back on that fortuitous piece of furniture saved his life. If he would’ve fallen gracefully to the carpet instead, I’d be a widow right now. The condition was called hypertrophic cardiomyopathy, and although rare, my husband had an ever rarer version of it, something you only see in textbooks. Doctors flocked in from all over the state to lay eyes on the man with the never-before-seen heart. They couldn’t believe it, and didn’t want to miss a chance to study him in real life. None of us could believe it. My husband was diagnosed through too many details to recount. Let’s just say: his body was opened, and explored, and put back together again. Injected, and implanted with an internal cardiac device. There were physicians, and nurses, and physical therapists. Occupational therapists for his broken (yes, broken) back. He was taught to walk again, and how to put on his socks with a metal instrument my 2-year-old coined  “The Picker.” We had to order specialty toilets, bedside commodes, and bathing equipment. I fed him, and cleaned him, and tried to learn my way around heart disease. I pocketed too many physician’s cards to count, forgetting all their names and their complicated titles. I laid on a tiny bedside couch for weeks, dosing myself with Benadryl to sleep through the nightly nurse rotations and vital sign checks. I ate if someone brought me something, and if they didn’t, I didn’t. I wouldn’t leave because I thought I’d miss something pertinent, and I needed all the information I could gather to try and save my husband. I remember his co-workers coming to visit, trying to crack jokes, and my friend meeting me in the lobby, suggesting I sit in the front seat of her SUV for a change of scenery. So I did, and I bawled. I missed my babies and my old life — even though I knew that life was gone now. One nurse picked up on my panic, the circling idea that if my husband never left this hospital he may never really know his son, so she let me sneak him in through the back door of the ICU one afternoon. My husband was too weak to hold the baby, so we just placed him on his chest, among all the wires and cords. We now belong to a select group of people who can say, “My entire life changed in an instant.” But I didn’t want to belong to those people. I wanted the safety and security my husband offered me when I offered him my hand in marriage. It was one of the traits that attracted me to him the most: predictability. After a life of chaos and turmoil, I could rest at ease with this man. What you saw was what you got — and I got a lot with him. But now? Now my future was one big question mark and relying on a piece of machinery to keep him alive until a heart transplant could be had. And then there was the other kicker. The one that would rob me of every joy I had fought for and earned in this lifetime: his condition was genetic. My children had a 50% chance of having it as well. Nothing prepares you for this — the dismantling of your family. I had a 2-year-old and a newborn. I should’ve been at home breastfeeding and bonding, not in an ICU bathing my husband. But, in sickness and in health. And in the upcoming year I was going to learn exactly what it meant to honor that vow as we faced the complete demolition of our faith and family — and my husband flat-lined for the second time. I wish this story had a happy ending, or really any ending at all. We are still living through the struggles of a sick spouse daily. Simple tasks that were once his are now mine, and that puts a strain on any marriage, even the most steady ones. He can’t drive our children, or stay alone with them, which is difficult to stomach when he used to be such an actively involved father. But perhaps the happy ending is this: perspective. For today, we are all still alive, and mostly still well. My family is intact — even if the edges of my sanity fringe a little at times. I’ve discovered that the consistency my husband offered me never really left, it just took a different shape. And as with any marriage, the person you committed to in that chapel may morph over the years. They may become a pale comparison of the man or woman you once knew, and thank goodness for that. Life gives you opportunities to let the old fall away and the good to stay. We have new roles now, but the same steadfast love. And as long as my heart beats, I’ll continue to honor that.

    What This Perfect Picture Doesn't Show You

    They say a picture is worth a thousand words, but what exactly are those words? What’s the worth of something that’s carefully curated, filtered and posed? I’ll tell you. I’m a recovering pretend-post addict, after all. Our most recent family photos were met with many words of praise: “Your children are beautiful!” “You look so gorgeous!” and predominately, the most gutting: “You have the perfect family.” No one could’ve known I was reading those comments with a pit in my throat, probably from the comfort of my bed, the one I refused to leave even for meals. It would be impossible to predict that behind closed doors I was crumbling — a woman on the verge of a mental break. One who had spent the last few years trying to save that very same “perfect” family. You see, a picture is only worth the story behind it, and no one knew mine. I was a wife, mother, sister, and friend to the outside world. I smiled on cue. I showed up to play dates, performed accordingly, dressed my kids well. I had a husband with a good job and a pretty home. That’s what they saw: a life tied up in a nice little bow. But here’s what was really going on behind our picket fence. Let’s start with my husband. He’s traditionally handsome and hardworking. A provider, a sacrificial and serving man. He doesn’t always have a lot to say, but I suppose it works well for us since I’ve been given the gift of gab. He’s a former athlete in his early 30s, and on any given day if you saw a photo of him you’d have no idea he has a failing heart. That’s right. My husband has flatlined — twice. In the summer of 2016, I found him unresponsive on our bedroom floor. His heart had stopped, and as it turns out, it is broken beyond repair. He has a rare form of an already rare disease, hypertrophic cardiomyopathy, and will need a transplant to continue living. The other kicker? This condition is genetic. Our young daughter and son have a 50-percent chance of having it as well. No way to see that in a photo. And then there are my children. My daughter (now 4) reads on a fifth-grade level. She spoke in sentences at 13 months old. She remembers every statistic from every show, book, movie or random conversation you’ve ever had with her. She was scouted by a modeling agency as a toddler, except I’m a horrible stage mom who wouldn’t miss nap time to take her to auditions. While other kids cried at new people or places, she ran in with ease. She’s an open-armed, loving, intelligent girl. Who’s also on autism spectrum. No way to see that in a photo. Next up is my son. He’s 2 years old with a size 11 foot. He’s physical and coordinated and can kick a ball well into a scholarship future. He’s the happiest kid I’ve ever met and oh, so handsome. That dimple does me in. He likes donuts, parks, putting things together, and thinks his sister hung the moon. He carries in my groceries and can’t go to bed without at least three kisses. I wish I could clone his happiness and drink up his smile. My son is magical. And yes, he’s also on the spectrum. No way to see that in a photo. And that leaves me. It hasn’t just been a few years of hiding in plain sight. It’s been my entire life. I’ve always wanted to blend in, and that came at a high cost: never knowing who I truly was. I considered myself a chameleon, which was a good trait to have if you wanted to please the masses (or men) but a detriment if you desired real relationships. Very few people actually got a look behind my veil, and that is probably why very few people have lasted in my life. So here’s my real portrait: I am a child who was abused by her father at 3 years old. A girl from a small town who developed a great imagination and used it as an escape into the world of reading and writing. A teenager who slept with someone who wasn’t her age — actually, who was six years older — and although consensual, it was also illegal. Add statutory rape to the list. I was a young woman who hopped from relationship to relationship — admittedly, sometimes they even overlapped (how dare I be alone for even one second?). I loved deeply — everyone except myself. I became a nurse because it was safe. I had a stalker, a professor who propositioned me, and cancer, twice. I moved to a new city on a whim, knowing no one. I was single for the first time in my entire life at 25 years old, and that’s when I met my husband. Cue the white knight. I married, settled into suburban life, tried to start a family, and had two miscarriages. Then I had my daughter, my son, and found my husband on the floor almost dead. Anxiety and depression have cycled through my veins my entire life, but now they are back with vengeance. Right along with low self-esteem and body image issues. Glamorous, huh? There’s a lot of beauty sprinkled in there too, but chances are that’s already public knowledge. I had no problem sharing my highlight reel; it was all this other stuff I kept hidden for far too long. So why can I say all of that now without breaking a sweat? Well, it’s because of that perfect photo. The day my daughter was diagnosed with autism I opened a private Instagram account just for myself. I used it as a journal, as a means to post the not-so-pretty. Itfreed me to be seen, and yet still remain unseen, because at the time I was fully committed to hiding who I really was. But when I posted our family photos, and the comments rolled in about my “perfect” family, I felt so icky about my half-truth life I decided to open up my private account for all to see. I was shaking as I hit the submit button, but as soon as I saw responses with a resounding message of “me too,” I knew I was home. I was finally accepted — mainly, most importantly — by myself. We all have a private versus public image, and that’s OK. There are things we show the outside world, and there are things we keep close. But the problem becomes when there’s no overlap. When you lead such a duplicitous life that you start saying (or posting) things you don’t even mean, feel, or believe. That may get you a million acquaintances, but in my experience humans in our core desire connection. Andthere’s just no way to get that through perfectly filtered photos and carefully worded posts. Not all stories need to be told on such a grand scale. My liberation was a long, long time coming. But the lightness I feel now trumps any fake feeling I had before. So if there’s a private image you want to make public, do it. Maybe even share it with one person first. It frees the space for others to follow, or at the very least, understand youbetter. No risk, no reward. And I promise when you do so, not only can your island of isolation shrink, the picture of your life will be worth way more than a thousand words.

    The Story of a 'Heart Mom'

    I am a heart mom, and our family is full of stories. Stories of joy and of a journey with unexpected hurdles and the glorious victories that come with having a child born with a rare and serious heart condition. Our world is complicated, but beautiful. It is hospital grays and multi-colored rainbows, equipment and tests, setbacks and successes. Our world is chaotic and wonderful, filled with love and full of potential. I am a heart mom, and our family is full of PROMISE. Although we’d made the trip to the hospital many times before, something about this time felt different — weightier. I peered out the window and saw a world of restless clouds and thundering skies. A world that may threaten storms, but then deliver a beautiful field of brightly colored wildflowers along the otherwise colorless highway. My nerves tightened, and I forced myself to take slow deep breaths, focusing on the cheerful spirit of the blooming wildflowers. I breathed in their glorious blues, and pinks, and oranges, and pushed aside the angry skies above. Their beauty was effortless and filled me with hope. I am a heart mom, and I am full of OPTIMISM. As our journey brought us closer to the hospital, the cloud-filled sky merged with equally gray, towering buildings. Fast-moving vehicles replaced the wildflowers, and the frantic grandeur of downtown snapped my mind back to the task at hand. We were not going on a vacation. We were making this trip because our daughter was sick. Her heart was no longer working the way her body needed it to, and it was time for her to have surgery again. While I understood the necessity of our trip, the reality of the coming days began to fill me with the same nervous energy buzzing in the city around me. We arrived at our destination, but our journey was just beginning. I am a heart mom, and I am full of APPREHENSION. Our time spent in the hospital brought us in contact with many different people. The individuals who cared for our child are varied in their titles, but similar in spirit. I saw the bold confidence in the faces of her doctors and surgeons. I felt the steady, caring touch of her nurses as they led her back to the operating room. They were unwavering in their strength and filled me with courage. They believed in themselves and they believed in our family. They helped me believe in our ability to get through this. I am a heart mom, and I am full of FORTITUDE. The faces of the others I’d seen in the hospital lingered in my mind as we waited expectantly for our daughter’s surgery to end. The faces of the loved ones who had hurried past her room with their arms clutched tightly around themselves. Afraid that if they loosened their grip, all of the fear they kept bottled inside would come spilling out of them. Worries that they wouldn’t be able to mop up and stuff back inside. I could feel their pain, and I could feel their prayers. They were mine as well. In that place, our struggles were our own, but we were united in the hope that the raging storm would pass, and we would remain untouched. I am a heart mom, and I am full of EMPATHY. The days that followed were a blur of medications, sleepless nights and concern. Through the turbulence, we cradled our girl with the sound of our singing; tried to settle her with consistent calm. When she finally awoke, we greeted her with relief brimming from our faces, reflecting the badges of bravery she wears in her smile. I prayed that our quiet strength assured her that the storm had finally passed, that she could begin to heal, secure in the knowledge that the most difficult part of this experience was now behind her. I am a heart mom, and I am full of PEACE. Our warrior girl returned home with her wings outstretched, soaring through the sunshine and back into the comforts of familiarity. The storm that accompanied our daughter’s journey did not end it. Her story is not over. This path that life has set us on is often daunting, but we will each continue to fly with our faces to the wind and strive to land victorious. I am a heart mom, and our family is full of RESILIENCY. I am a heart mom, and our family is full of stories. Stories of intimidating journeys and beautiful endings. Stories of promise, optimism, apprehension, fortitude, empathy, peace, and resiliency. I am a heart mom, and our family is full of LIFE! We want to hear your story. Become a Mighty contributor here .

    Catherine Ashe

    Trisomy 18 and Worrying About My Son's Death

    Today was a hard day. I am so glad to be home. So glad to have this sweet boy snuggled in my lap again, sleeping next to me in bed. Yet, when I look at him, there is a flash – just a nanosecond – where I think of his death. My heart shudders, and panic seeps into my very marrow. My children are my heart. They are everything good about me. My husband and I made something beautiful, and we see it every day in those shining faces. I’ve been allowing myself magical thinking. Believing that even though he has a terrible disease, he will beat the odds. He will be the occasional baby who lives to be 15 or 20. And then sometimes, the truth slips in. Less than 10 percent. Less than 10 percent survive to one year. Just this past week, a sweet 3-year-old baby with trisomy 18 abruptly died. Her parents were completely unprepared. The trisomy community was completely unprepared. It was like a knife to the center of my being. It cut straight through the shell I have built around myself, the shell of believing, of being eternally optimistic, that James will be that one in a thousand. It split me open, and the reality of what we face came spilling out. I am tired. I am so anxiety-ridden sometimes. I snap at my daughters. I yell when I should be patient. My daughters decided today would be an excellent day to empty out every single clothing drawer onto their bedroom floor. They have a fairly significant amount of clothing. I can’t even deal with the mess. They took a bath mid-afternoon to play. There are wet towels piled on the bathroom floor. The dishes from dinner are piled in the sink. There is an overflowing basket of clean laundry at the foot of my bed. I haveno clean burp cloths. James’ medications for the next week need to be dispensed. I didn’t make dinner, we reheated leftovers. I need to put away the girls’ summer clothes and start figuring out what they have for winter clothes. It sounds like I did nothing today. I nebulized and coupaged James every four hours. I pumped every four hours. I fed my children. I played three games of Uno, two games of Memory, and one Alphabet Game. I read my book some. I am trying to find joy. I want to find joy so much. And many days, I do. But today, I just feel sad and cheated and angry. Watching James struggle, wondering why his oxygen requirements have so increased (we still haven’t really figured that out), watching him fight to breathe every time he spits up, knowing his hypertrophic cardiomyopathy (HCM) makes him ineligible for heart surgery, knowing somewhere down the line, I may have to watch him die from heart failure – I just want to lie down and never get up again. I certainly don’t want to do laundry and dishes. When we were in the hospital, I never really let myself consider that he might never come home. I believed once we figured out the tachycardia, discovered the HCM, he would get a medication “tune-up,” and we’d whisk out of there. Somewhere in that thought process, the reality snuck in – that we might never leave. That instead of going up, he might go down. Every cold, every sneeze, every inexplicably fast heart rate could signify the beginning of the end. And there won’t necessarily be any warning, any time to prepare. I’m suspended in this time, waiting. Right now, I am going to bury my face in the little crook between his neck and his chin and inhale that sweet, sweet baby scent he still has. I am going to try and find my joy again, and try not to let trisomy 18 control it. But sometimes it is so, so hard. We want to hear your story. Become a Mighty contributor here . Top Thinkstock image by Christin Lola