Hirschsprung's Disease

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Hirschsprung's Disease
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    JJ23

    New here

    #Parenting I am a mom of a 9 year old that has hirschsprungs disease, autism and adhd. He had a ileostomy placed on March 14th this year. A challenge learning our new way of life. Keeping him hydrated is the hardest part.

    Community Voices

    Mighty has saved my mind

    <p>Mighty has saved my mind</p>
    1 person is talking about this

    Doctors Need to Change the Way They Deliver a Down Syndrome Diagnosis

    They say when you become a mother, your life changes completely. I had heard this all my life, but on the 1st of August 2017, I started to believe it, too. I still remember the moment my precious little angel came into this world. But unlike many other mothers’ experiences, my moment wasn’t happy. It wasn’t because my baby had Down syndrome, but because the people who delivered the news to me said it with so much grief in their voice, that I thought maybe it was sad indeed. Being a physical therapist, I was aware of Down syndrome and the therapy requirements that may be associated with it. But I wasn’t completely aware of what it meant (I now use the term possibilities). Even before my family could properly introduce themselves to Laksh, he was taken away and put in the NICU. After a few days of tests and examinations, we were finally in an informed position. We were aware of our son’s diagnosis. He had Down syndrome and Hirschsprung’s disease. Those days were very confusing for my husband and me. In the first few days of my son’s life, we were told about all the things he would not be able to do and all the difficulties he would face. In those moments of weakness, I cried. I cried every day, before I went to visit my son in the NICU and after I came home in the evening. As I sat at his bedside looking at his tiny hands and feet and his big eyes, I refused to accept that he wouldn’t be able to do the things that my husband and I had wished for him since the day we first found out I was pregnant. I decided to research about it on the web, but that didn’t help either. Then, I reached out to some mothers online and heard their stories. I was relieved when I heard what their children have done and are doing. There are some individuals with Down syndrome who are entrepreneurs, some are actors, some dancers, some are baristas, but the takeaway for me from all of this was that they are doing what they want to do with their life. They did not listen to the world when it told them that they couldn’t — and neither will my Laksh. Laksh is 2 years old. He walks and has just started to run a little. He says a few words like mumma, dadda, book, nana (grandfather in Hindi), but most of all he communicates with his actions and words combined. He can sign a few words like more, all done, milk, water, shoes, socks, etc. He loves music and can open the YouTube app all by himself and play his favorite songs. Every single day, my little munchkin is learning something new and teaching us as well. I do not want any new parents to go through what we did. I want all parents to celebrate their children and not worry. I want these parents to look at our kids and see how lucky we are to have been blessed with such beautiful children and a wonderful journey. And I want them to believe that they are going to be OK with their little guy or girl. Other stories you may enjoy: What I Wish Doctors Had Said When My Child Was Diagnosed With Down Syndrome The Doctor Didn’t Follow Protocol After Our Down Syndrome Diagnosis

    Community Voices

    Raising awareness of a chronic ill mom and critical ill son

    <p>Raising awareness of a chronic ill mom and critical ill son</p>
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    Community Voices

    Struggling to survive

    I don’t understand how I even got here. I’m extremely tired. My life of mental and physical health issues is like a roller coaster with many twists and turns but it never stops but when it seems its going here comes a drop!!! Hair swings back, air smacks wide and hard in the face, heart drops to the stomach holding on for dear life. Looking around on the way back up seeing no one around no other passengers no one conducting the coaster just you on the roller coaster of illness. Even with the medicine, coping skills, and procedures the coaster slows down but it never stops. I just want a friend, a pet, a kid or two a consistent source of income to be on this flow with me and never let go! Had a few but they jump off before the drop hits and says their afraid of heights so Am i but I don’t have a choice I have to be here. I don’t need you to hold my seat belt or rearrange my harness just sit beside me through the loops and hand me some support or two. #Anxiety #Depression #HirschsprungsDisease #Ostomy #PTSD

    Dallas Fowler

    A Mom's Apology/Thank You Letter to Her Son's NICU Nurses

    As a mom who has been in and out of the hospital with my son his whole life, please believe me when I say I’m sorry. I know I’m one of those nightmare parents you go back to the nurse station and talk about. Please believe me — there is nothing I want less than to make your job harder. There’s a reason I am this way. There was a point in time where I sat and watched my newborn baby fight off septic shock. I watched as machines breathed for him, I watched as the drains emptied infection from his small body, I watched as my son almost died. Of course, you guys were there right beside me, taking a little more time explaining what the arterial line in his neck was for than his surgeons did. You guys were there when I was finally able hold him for the first time in weeks. You were the ones who picked up my sedated newborn, along with all his lines, drains and ventilator and handed him to me. Who handed me tissues as I cried, who took my phone off the table and took pictures of me and him without me knowing. Pictures I will truly cherish forever. You guys were always as excited as me when his white blood cell count went down a little. “One day closer to getting the hell out of here,” I remember one of you saying. A nurse was the one who showed me how to care for my son’s colostomy bag the first time. I don’t think nurses get enough credit, so believe me when I say I do not mean to be the mom who makes your job harder than it is. When you watch your child go through the things I have watched my son go through, to fight off septic shock at 3 weeks old, to survive a bowel perforation that caused his stool to leak through his entire body cavity, to having multiple surgeries, multiple bowel obstructions, multiple infections, stoma revisions, dilations and irrigation treatments twice a day for months, you learn a thing or two about your child. I know normal post op behavior for him. I just know what’s normal. So when it’s 3 a.m. and my sweet boy is only a few hours post-op, please don’t think I’m ridiculous for saying, “He feels too hot,” “He’s in too much pain,” or “Something just isn’t right.” Mother’s intuition is incredibly strong, especially when I have been through this so many times. Check his temperature, page the on-call for permission to give more pain meds, and don’t be surprised when I ask you to ask for an abdominal X-ray because I know something just is not right. You’d be surprised how many times the X-ray has shown impacted stool and an obstruction. You would be surprised how many times my son has started throwing up shortly after, how many times he’s gotten the NG tube just in time for relief because I have been that mom. Many of you know me and my son now and have come to trust that I know my son better than anyone. I am thankful for this, but at the same time incredibly sad you do know us so well. I don’t mean to be the nightmare parent who tells you he’s finally ready for clear liquids and asks if you’ll ask the doctor. I am so thankful for nurses. You all do a job I could never do. Not all angels have wings — some wear scrubs. Follow this journey on Dear Dallas. The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. Check out our Submit a Story page for more about our submission guidelines.

    Alethea Mshar

    Hirschsprung's Disease: Thanking the Pediatrician Who Gets My 'Zebra'

    There is a phrase taught to all medical students that becomes a mantra: “When you hear hoofbeats, think horses, not zebras.” In med school students learn about all kinds of diseases, many of which they’ll only see a few times in a career. It’s a simple way of reminding them how to prioritize the list of differential diagnoses. The common ones are considered horses, and rare diseases are zebras. This makes sense, except when you parent a “zebra.”             My son has Hirschsprung’s disease. His first pediatrician treated him for constipation and dismissed my protests that something more serious was wrong, so after he was diagnosed it was important to me to find a new doctor who had the discernment to care for my zebra. Our son has shown up as a zebra in a couple of other ways over the years, and our current pediatrician listens to me and takes into account our son’s unpredictability. A couple of times he has walked into the exam room saying, “when I see Ben’s name on the docket, I always feel a little trepidation.” But heeding that feeling has served him well. He’s cautious, curious and diligent when managing Ben’s care, and considers any day a good day when he learns something new. He delights in discovering better ways to approach patient care, and doesn’t hesitate to consult with colleagues when he’s uncertain. He always has a plan B or C waiting in the wings when considering Ben’s care, because he’s considering both horses and zebras. He also takes my needs into consideration, communicates clearly what he is thinking and makes time for my questions, never pressuring me to hurry. If you built the ideal pediatrician for a child with a few different zebra diagnoses, he would be it. I’m thankful to have him on Ben’s team. The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. Check out our Submit a Story page for more about our submission guidelines.

    Dallas Fowler

    Mom Responds to Woman at Walmart Who Called Son's Stoma's 'Repulsing'

    Tonight, we were in Walmart standing in a long line waiting to check out. My sweet 2-year-old wanted me to hold him. As I picked him up out of the cart, his shirt came up exposing his two stomas and bags on his stomach. Typically, I have a onesie underneath his shirt, but tonight I just got him dressed quickly to run to the store. The onesie helps to keep his bags in one place and makes it harder for him to tug and pull them off. There was an older woman in line behind me who caught a glimpse and shrieked a little before she said to me, “Why in the world would you let someone do that to him?” I turned around speechless and just looked at her before she continued and asked why he had them. I gave her the short version and basically said, “His colon didn’t finish forming so he needed them.” I left out that he had a rare disease called Hirschsprung’s disease because I was a little annoyed from her first statement. She then goes, “Well I am sorry, but I just think that is so repulsing, can you please keep his shirt down?” At this point I just wanted to shake this woman and scream “What is wrong with you?” But instead, I told her to have a good night and went to another line. So now I’m sharing this picture — because there is nothing repulsing about my son. Stomas and ostomies seem to be a taboo, when in reality, more than 500,000 Americans have one. My son’s disease may be rare, but his stomas are not. So here’s a little education for anyone who doesn’t know about stomas and ostomies. A stoma is a surgically created opening that allows the body to expel waste. Both of my son’s are from his colon, but stomas can be from your ileum (small intestine), or bladder. Was this the first choice of a life I would have chosen for my son? Absolutely not. But this was his only shot at life. When he was 2 weeks old, his colon ruptured. It left him with a life threatening infection that nearly killed him. His stoma saved his life. There is a very good chance he will have these for the rest of his life, and if he does, it will be my job to teach him a positive body image. It will be my job to teach him to love himself and his bags. Had he been a couple years older and been able to understand the ignorance the lady was spewing in line behind us, how much of a negative impact do you think that would have had on him? What that woman doesn’t understand is, when my son is healthy, he is no different than any other 2 year old. He runs, plays, swims and goes to daycare. When he’s healthy, you wouldn’t be able to look at him and know he’s had more than 20 surgeries and procedures. You wouldn’t know he’s got more ahead in his future. You wouldn’t know he gets painful home dilation and irrigation treatments twice a day every day. You wouldn’t know that twice a day a catheter is put into his stoma to “feed” it stool in the hopes of growing his colon. My son is my heart. He is so funny and full of personality. He is sweet and loving and kind but also a little ball of fire. Please be kind and choose your words wisely, especially should you choose to comment about something that is none of your business. Everyone is fighting a battle you know nothing about, and my son is winning his. Follow this journey on My Hirschsprung’s Hero. The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

    Ashley Bernier

    Intestinal Failure, Hirschsprung's Disease: What Parents Should Know

    When the surgeon came out of the OR after having been in there with our newborn son for several hours, he told us the super rare disease he had said not to worry about was now our new reality. He had confirmed the intestinal failure diagnosis with biopsies mid-surgery and had just stepped out to give us the news before returning to finish the operation. I remember looking around at our immediate family. I remember watching them all pull out their smartphones and start to Google the name of that rare condition. We all wanted more — more information, more insight as to how this happened and most of all, how we could fix it. I wish when we had all Googled his condition we had found real life stories of families’ experiences with the disease instead of medical journals. I wish we would have found something that spoke to the emotional side of this disease — the anxiety and worry and awareness of the fragility of life — that my young son would soon have. I wish it would have told us he will have dozens of surgeries and procedures over his lifetime and that because he is so rare, many of these surgeries will be innovative and new for his medical team. I wish I would have seen articles about what it’s really like to be a full-time mom and nurse to a child with a rare chronic illness. I wish I would have seen photographs of happy children laughing and playing instead of the images in my mind of our beautiful sick baby with tubes and wires all over him. I wish I could have Googled how many friends and family members we would have pull away from us over the years as they grew weary of our son’s journey. I wish I could have Googled cases as rare as our son — so rare and complex that he will be affected severely by his disease for his entire life — instead of the cases we read about being “cured” after one or two surgeries and only a few weeks of treatment. I wish I could have Googled how difficult this journey would be, about the nights I would spend in tears searching for interventions and ways to help our son, about the worry I would have and the hope I had for him to live a happy, fulfilled life. I wish we could have found articles about the effects of chronic illness on siblings, and I wish we could have known how strong their bond would be — how protective his younger brothers would be of him and how they would be the absolute best of friends. I wish we could have found articles about the advocacy role we would have to take on, about the phone calls and letters we would write, about the barriers we would need to help break for our son as he grows. I wish I could have found articles about my broken heart and how it would slowly start to heal over time, that it would never ever get easier to watch my son in pain but that I would learn to cope and appreciate each milestone big and small. I wish I would have seen articles about how incredible, strong and brilliant my son would be despite all of these hurdles and challenges that he would have to face in his lifetime. I wish I would have been able to read about how lucky we were in so many ways because we were going to learn a lifetime of lessons from our son and his siblings and have a deeper love and appreciation for them than we could have ever dreamed. I wish I would have been able to find something that would have told me that we would be OK, that he would be ok… that in spite of the lifelong battle we were beginning to fight we would come through stronger, more resilient and more in love with each other and our children than I could have ever imagined. The Mighty is asking the following: Write the article you wish you’d found the first time you Googled your or a loved one’s diagnosis. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

    Dallas Fowler

    To Mom Who Said I Shouldn't Have More Kids Because of My Son's Disease

    “Are more kids a plan in your future? I couldn’t imagine having to do what you do, and what if you have another kid with it? Surely not, because I’m sure you would feel guilty if you had another with the same disease. It’s hereditary right? I just pity you so much.” Excuse me? Pity me why? “ It? ” My son’s disease has a name, and if you’re not close enough to us to even know the name of it (actually, even if you are), then don’t pity me. Don’t judge me. Don’t judge my son. M aybe you don’t know how your words can affect people. Maybe you don’t know how they affected me tonight. Maybe you don’t think you said anything wrong, but you did. More kids are absolutely a plan for my future. My son is the biggest blessing I could’ve ever received. I can’t imagine my life without him. I can’t imagine the person I’d be or the path I’d be on. My son has made me grow and better myself; he’s changed me in so many good ways. Yes, it is so hard. Money is tight, medical supply pricing is ridiculous and chances are your insurance is never going to pay for everything you need. (And if they do, will you please send me your insurance company’s info?) I think I’ve cried almost every single day for the past two years. But they’re not always tears of sadness. My heart breaks for my son when he’s in pain or sick, but my heart is so full on the good days, like when my son gains a pound or when biopsy results come back with a positive report. So many of the tears I’ve shed were happy tears. I can’t even begin to express the happiness my son brings me. Every. Single. Day. I think if you ask any special needs parent, they’ll tell you not to pity them. They’ll tell you how full their heart is, that they don’t regret their child. I think if you had a heart-to-heart with one of us (without the judging), you’d know the lessons we’ve learned from our children our irreplaceable. Yes, we would take away our child’s pain if we could. If only we could — but we can’t, and yes, we have accepted that. So instead, with as much strength and courage we can muster, we will support our child. We will hold their hands as their vein folds trying to get an IV in for the fourth time. We will help the nurses hold their head still while they place an tube down their nose and into their stomach. We will cradle and rock them while trying to keep our composure as the surgeon is giving more bad news. We will wait patiently for them to wake up from anesthesia. You’ll know a special needs parent when you see us. We’re the ones looking down at the notebook when we’re talking to our child’s surgeon. The notebook holds all the questions we don’t want to forget. We attempt to live this life with as much grace, courage and strength as we can. Encourage us, support us, lend us an ear if we need one. Don’t pity us. Follow this journey on Dear Dallas. The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.