Congenital Heart Defect/Disease

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Congenital Heart Defect/Disease
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    Welcome new members! Introduce yourself here and share your CHD story.

    <p>Welcome new members! Introduce yourself here and share your <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> story.</p>

    Hey Educators, Let's Stop Comparing Our Students' Disabilities

    I’ve been working in special education for almost 10 years, and one of the things that frustrate me the most is when I hear teachers compare their student’s abilities to that of other students. I was once a student with a disability in the education system. Growing up, I always had trouble in school. I had a congenital heart defect, and because my disability wasn’t visible, I was always pushed to do things my body couldn’t do. One of the areas was in P.E. I was often told I had to run a mile but I physically couldn’t do it. When I said I couldn’t, I was seen as defiant, and my dad would be in the office fighting with the administration the next day. I switched schools constantly because of teachers pushing me beyond my physical limitations, and I was soon seen as a kid who just exaggerated things and had overprotective parents. When I got into middle school my undiagnosed autism started to become more of an issue. Where I once was an A student, my grades started falling, and I was seen as a gifted student that was just “lazy.” Society has been conditioned to compare. We often hear things like, “That person has it so much worse, so why don’t you try harder.” “If they can do it, then you have no excuse.” This thinking is deeply rooted in ableist ideas and inspiration porn. One of the things I try to remind educators when they see a student who seems like they are being lazy, not doing work, or distracted, is that we aren’t in their body or their mind. We are complex creatures and disabilities present differently in everyone. Many disabled students have multiple disabilities, chronic illnesses, and/or mental illnesses. These comorbidities can dramatically affect a student’s primary disability. One person with ADHD, autism, cerebral palsy, Down syndrome, lupus, anxiety disorder, etc. isn’t the same as another. Learning how your specific disabled student functions and thrives with their disability is the path to their success. I’ve seen a lot of educators get frustrated with a student when they compare them to someone who they deem as needing high support or who they think has it rougher than others. These assumptions are often based on the awkwardness of a student, their social interactions, how they communicate, or their physical limitations. They see these kids and determine that if they can get good grades and be a good student, then a student who might have a similar diagnosis and isn’t doing work must mean they are lazy or could do more if they only tried. For students who have an invisible illness, people might have less empathy towards them in comparison to other students who have a visible disability, or whose disability presents in a way that is more obvious. We think of those kids who are constantly going to the nurse as engaging in task avoidance instead of trying to understand how a disability might cause a child to go to the nurse’s office more frequently. Shifting our educators’ focus from comparison to acceptance, understanding, and education on how disabilities present differently in each person can really help our disabled students succeed. Just because one person can do a task a specific way does not mean another can do the same. Disabled students deserve an understanding of how their disability affects how they learn. Educators, stop comparing students’ disabilities and start educating yourself on ways to help our disabled students thrive.

    Community Voices

    MCTD warrior - having it all, but not what you want.

    <p><a href="https://themighty.com/topic/mixed-connective-tissue-disease-mctd/?label=MCTD" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce9d00553f33fe997fbb" data-name="MCTD" title="MCTD" target="_blank">MCTD</a> warrior - having it all, but not what you want.</p>
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    Community Voices

    I’m new here!

    Hi, my name is JoshR. I'm here because my son was born with a CHD and looking to join a community of people dealing with the same things.

    #MightyTogether

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    Community Voices
    Community Voices

    The Shame I Felt as a Teen With a Congenital Heart Defect

    I was born with a congenital heart defect, and at 14 I had a major open-heart surgery that affected my experience throughout high school. Even as I write this story, I find it hard to talk about. As a disabled advocate, I write a lot about disabilities and mental health as well as my experiences. However, speaking about my experience growing up with a disability and my congenital heart defect has always been rough, especially when I was a teenager. The desire to be “normal” and fit in with peers is hard when you are a teenager with a disability. Growing up, I never talked about my heart condition because I didn’t want people to associate me with my disability. I felt guilty about taking space in the disabled community. I still was able to do most tasks that were expected of me, so I felt I wasn’t worthy of talking about how my disability affected me. I looked to my father who had become disabled and was always in pain. While he always advocated for me and fought for my rights, I saw how he reacted to his own disability. He wouldn’t talk about it and often hid his pain. In return, I believed that talking about my disability and my pain was attention-seeking and a sign of weakness. As a teen, I didn’t want to be seen like that. So I kept quiet. In between my freshman and sophomore year in high school, I had my second major open-heart surgery since I was born. Up until then, I was always able to keep my disability hidden. Just a couple of my close friends knew about my heart condition. It was easy to hide as at that point, my open heart surgery scar from when I was a baby was barely visible. After my surgery, my heart condition was brought to the forefront, and many of my friendships changed. I was seen as someone they needed to protect. As a teenager, I wanted to be seen as a “normal” teen. I wanted to rebel and do things that normal teenagers do without people focusing on my “heart problem.” But I felt like everyone wanted to put me in a protective bubble. I was sheltered and my mental health was often ignored. When it came to visiting doctors, I hated talking to them about what was going on. I felt like no one cared about my opinion, and if I just shut it all out I could ignore it even more. During my cardiology appointments, my parents would take control. The doctors and my parents determined what happened to my body. Control became an issue for me. I felt like I had to figure out a way to control my life and my body. My mental health took a downturn. On the outside, I seemed like a teen who had it all figured out. I had straight As, I was involved in school and I had a boyfriend, but inside I was struggling. I didn’t know how to talk about what I was going through, which caused a lot of mental health issues. It wasn’t until I was in my late 20s when I started following other disabled advocates on social media that I started to take pride in my disability. Participating in the online community brought a new understanding of having a disability. I realized I wasn’t alone in my experiences. I started becoming more proactive in my cardiology appointments and learning and researching more about my condition. I still have trouble advocating for myself but I have learned how to ask others for help.

    Andrea Doten

    Having a Scoliosis Diagnosis and Surgery as a Young Teenager

    It all started when my mother took a piece of loose-leaf paper, held it against my back, and used a fluorescent yellow highlighter to trace my spine. “Your spine is literally curving,” she said to me. “No, it isn’t. That’s impossible. The doctor said it’s because my left lung doesn’t breathe well, so my right side is more developed. That’s why I have a shoulder hump,” I argued back. But the infamous thin, yellow line on the wide-ruled, lined paper proved me otherwise. When my cardiologist, of all people, first said the word “ scoliosis ,” I had never heard the term before. What did it even mean? Was it “bad?” What was “wrong” with me? What was going to happen to me? My cardiologist recommended I see my pediatrician for confirmation of the diagnosis, but he gave me a referral to an orthopedic surgeon at Johns Hopkins, where I already regularly received care for a congenital heart defect . I don’t remember much else about that day, but I do remember my cardiologist mentioning the possibility of surgery if my scoliosis progressed enough. “I’m sure the orthopedic surgeon won’t force you to go through surgery unless it’s necessary. You’ve already been through enough in 13 years,” my mother said on the drive home from the annual cardiology checkup. I don’t know if she truly believed that statement or if she was trying to comfort me. Either way, I believed her at the time. I was officially diagnosed with scoliosis in August, 2008, though I don’t think I doubted it at that point. I had already received confirmation from my cardiologist, my pediatrician, and my orthopedic surgeon. My X-rays showed I had a 30-degree curvature in my lower thoracic spine, which was considered moderate scoliosis . When I was informed of this fact, I figured the next step would be a back brace. I had prepared myself for that treatment protocol. I wasn’t prepared for what my surgeon actually said: “You’ll definitely need surgery.” I was both surprised and upset by his admission. “What about a back brace?” my mother asked, as she was probably thinking the same thing as me. “In my experience, back braces don’t really work, and they just postpone the inevitable,” he said. I was saddened by his lack of willingness to try a back brace to stabilize the curvature, but looking back on it now, I appreciate his candor about their supposed usefulness — or lack of usefulness — and that he didn’t force me to wear an uncomfortable, sweaty back brace for 20 hours a day during my adolescent years. Being the meticulous student I was, my first thoughts were both wondering when the surgery would be scheduled and hoping that I could wait until the following summer to undergo it, as I was starting my final year at my private, Catholic Pre-K-8 school. I was already facing a major procedure; surely I wouldn’t have to miss school on top of it. Due to the nature of my condition, I was self-conscious about my curved spine, resulting in a crooked posture during my early teen years. My so-called “friends” bullied me because of my spine, and I often came home crying about how much I hated school because I was being teased about something I couldn’t control. Since I would have to have the spinal fusion surgery before the school year was out, my mother decided to take matters into her own hands. It was seventh period on a Friday afternoon in January 2009. My seventh-period class was usually either art or religion class; but today, seventh period would be spent in neither art nor religion. Instead, seventh period would be spent in the school library — since it was one of the few rooms large enough to hold the entire eighth-grade class but was also small enough to allow us to have an intimate discussion. I didn’t want to face the rest of my classmates, but my mother insisted I be present for the moment when she told the class about my upcoming surgery, so I chose to sit in the far corner of the library near a dusty bookshelf that held various biographies. My mother explained everything about my scoliosis to the class: my diagnosis, the fact that I would miss a significant amount of school time for surgery, and how much aid I would need once I returned to classes. The recovery would be quite restrictive in regards to normal functioning in a school environment — or any environment for that matter: I wouldn’t be allowed to lift anything over three to five pounds even though my orange-and-white flower-printed backpack often weighed over 10 pounds. I also wouldn’t be allowed to participate in gym classes or field day — not being allowed to participate in my final field day at my school bothered me more than not being allowed to participate in gym. Overall, I would need a lot of time to physically recover from this surgery. I tried to live as normal of a life as possible before my surgery. I attended classes and dances and rehearsals for the annual musical in between pre-op appointments, X-ray procedures, and pre-surgery blood draws. The cast party for the end of the spring musical, “ Godspell ,” was the Friday before my surgery. The party didn’t feel like much of a celebration, and I had such an insignificant part in the play that I could have dropped out and nobody would have noticed my absence. Lots of cast members, mostly my fellow eighth-graders, were crying — and by crying, I mean sobbing — over the end of their final performance of middle school. I felt disconnected for most of the party as I had the cast and crew sign my program and wished my classmates and teachers farewell for the time being. I had bigger worries on my mind than the end of a grade school musical. The big day finally arrived: March 30, 2009. I woke up early to be at Johns Hopkins Hospital on time, which was 6:00 a.m. I didn’t need any reminders — the date and time had been inked on the kitchen calendar since it had been scheduled back in December. After I had showered, grabbed my belongings, and kissed my dog goodbye, my parents and I left for Hopkins. As we drove to the hospital, my level of nerves began to increase drastically, but I ignored them for the time being. I still didn’t want to believe what would be happening in about an hour-and-a-half. The ride to the hospital was easily one of the longest car rides of my life, even though we live only 22 minutes from Johns Hopkins. We arrived at the hospital and walked down the long corridors where we were directed to pre-op. I secretly wished we could have gone through the domed Billings Administration Building where a marble statue of Jesus Christ, or “The Divine Healer,” stands so I could rub His foot before my surgery. Alas, the Children’s Center was nowhere near the Billings Administration Building. After I arrived at the pediatric pre-op area, I did all of the things the staff asked me to do:  I changed into a hospital gown, I had various lab tests taken, and I discussed the anesthesia procedure and the operation itself with my surgical team. Members of the team told me what to expect when I woke up, and then one member said he would be back in a few minutes. At this point, I knew the inevitable was approaching, but I still didn’t want to believe I needed to have surgery. Maybe my orthopedic surgeon would come back to the pre-op room and tell me I didn’t need the surgery done after all. Despite these thoughts, though, I knew I was just kidding myself. Mom put on the sterile clothes she was required to wear: a gown, a hair net, surgical slippers, and a surgical mask. I only needed the hair net and surgical slippers. When one of the team members arrived and said it was time to go in, I kissed Dad, Grandma, and Pop Pop goodbye and left the pre-op area with Mom. It was time for the moment I had been dreading since December. It was “go time.” As Mom, the member of my surgical team, and I walked to the operating room, I began to get really nervous. I don’t really know why I walked into the operating room and wasn’t wheeled in on a stretcher, but so be it. I swear my heart rate went up with each step and each passing moment. The journey seemed endless as we wandered through the maze of hallways, and just when I believed we had reached our destination, we turned another corner to prove me wrong. Finally, we reached the operating room where my surgery would take place. As I walked into the operating room, I saw my surgeon reviewing my X-rays. I hopped up onto the surgery table, hoping not to get a glimpse of the sharp scalpels and saws. As the operating team hooked me up to various monitors and machines, I held my mom’s hand tightly and began to cry. That moment was when it finally hit me: I was having surgery, and there was nothing I could do to stop it from happening. All I could do at that moment was pray and cry. Once the anesthesiologist put the anesthesia mask on me, I started to inhale my vanilla-scented, anesthesia air, thanks to some Lip Smacker Chapstick smeared on the inside of the mask. I began to worry that I was not falling asleep. Mom told me to relax and not to worry. Those few minutes are all I remember about the operating room. When I woke up in the ICU, I felt a sharp, painful, soreness wash over my body like a massive tidal wave. Though I was still groggy from the anesthesia, I immediately wanted to know where my family was. My parents came in to see me, but they could not stay long because they needed to get home to care for our dog, so my grandparents spent most of that initial day with me. I don’t remember the rest of the surgery day because I was sleeping on-and-off through it. The next day, I was moved into a regular hospital room. This room was where most of my visitors came and where much of my early recovery took place. When I was transferred from the ICU to my hospital room, all I remember was a groggy, heavily medicated ride down long hallways from one room to another. When I started my physical therapy the following day and sat up for the first time, I felt dizzy and nauseous, and I was in a tremendous amount of pain. My first task was to slowly walk over to the chair in my room so I could sit up for a few hours. One minute seemed like one hour or even one whole day. Every day afterward, the physical therapist would work with me so I could relearn how to walk and climb stairs. These tasks, which were once so natural to me, were suddenly far more difficult. It took all of my energy to simply get up and go to the bathroom, sit up in a chair, or climb stairs. My recovery was not a pleasant experience, and I learned to never take my mobility or flexibility for granted. After six long days in the hospital, I finally got to go home on April 4, 2009. The bumpy car ride out of Baltimore was very painful on my back, mostly because I was stubborn and did not take my pain medication like I was instructed to do prior to being released from the hospital. I arrived at my house, where I continued to recover and improve. My recovery was a long, slow process, and I felt like it would never end. Now almost 13 years later, this memory sticks with me because I overcame a great fear — something I did not want to happen. I learned not to take simple things for granted because of my scoliosis surgery. After facing and recovering from this surgery, I realized I can do anything and to never give up hope no matter how difficult things seem to be.

    Community Voices