Birth Defect

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#Vacterl Adult Introduction

I joined years ago and decided to make an intro post finally…

I was born with a rare birth defect and now I’m a #Vacterl adult, married to a Danish guy who happens to be a VACTERL adult as well (we met at a support group in 2005 and married in 2011 ). I’ve had over 200 surgeries. Every VACTERL person is different… for me I have: #scoliosis , #analmalformation , #malabsorption , #tef , #solidarykidney , and a #limbdeformity . I catheterize through my bellybutton.

I’m a journalist turned medical PTSD expert, MFA graduate, disability advocate and memoirist, with some hospice admin on the side. As for hobbies: I crochets as therapy, binge watch random shows (I watched ten seasons of Hoarders in a row), and I’m a bookworm. I talk on my IG/FB/threads about my health, what I am reading and my crochet projects. I love Mexican food, historical fiction and mystery novels and I love watching police procedurals.

Photo is of me and my husband.

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✨Memoir Spotlight✨—“Ugly” by Robert Hoge

Robert Hoge was born with a giant tumor on his forehead, severely distorted facial features and legs that were twisted and useless. His mother refused to look at her son, let alone bring him home. But home he went, to a life that, against the odds, was filled with joy, optimism and boyhood naughtiness. Home for the Hoges was a bayside suburb of Brisbane. Robert's parents, Mary and Vince, knew that his life would be difficult, but they were determined to give him a typical Australian childhood. So along with the regular, gruelling and often dangerous operations that made medical history and gradually improved Robert's life, there were bad haircuts, visits to the local pool, school camps and dreams of summer sports. “Ugly” is Robert's account of his life, from the time of his birth to the arrival of his own daughter. It is a story of how the love and support of his family helped him to overcome incredible hardships. It is also the story of an extraordinary person living an ordinary life, which is perhaps his greatest achievement of all.

#themightyreaders #BirthDefect #LimbDifference #LimbAmputation

2 reactions

I'm new here!

Hi, my name is gkpoole1227. I'm here because I had a congenital birth defect in my heart. I had a bicuspid instead of a tricuspid aortic valve which had caused an aneurysm in my aortic arch. In April of 2021, I had my aortic arch and my aortic valve replaced during the same operation. Directly after the surgery, for three days I suffered with delirium, where I did not know my husband or daughter. It was a very scary time. I would also say I experienced brain fog for months. I have had some vision problems as well- though that seems to be improving now that I am 2 years out. As some other women have stated, I also had some hair loss after the surgery.
Kimberly Poole


3 reactions 1 comment

I’m new here!

Hi, my name is MummyTut82. I've been diagnosed with so many illnesses diseases that at age 40 and Mum of 3 darling children, I have lost all quality of life and I'm scared of myself honestly.. For I can't keep just 'existing' like this and I know it is destroying my children's hearts watching me so sick ... it breaks me more every minute coz I honestly believe they shouldn't have to see Mummy this way anymore it isn't fair on them... #icantdothis😮‍💨 #heartbroken💔 #idontwanttoleavemybabies😪 #itisjustfartoomuchtohandle💔

#MightyTogether #PTSD #Fibromyalgia #Anxiety #Depression #ADHD #OCD #Grief #Leukemia #FunctionalMovementDisorder #DiabetesType2 #Cancer #RheumatoidArthritis #OpticNeuritis #NeurocardiogenicSyncope #DemyelinatingNeuropathies #CeliacDisease #InappropriateSinusTachycardia #congenitalheartdefect/Disease #BirthDefect #IronDeficiencyAnemia #Arthritis #ArteriovenousMalformation #SuicidalThoughts #chronicactiveepstein-BarrVirus #ChronicIllness #polycysticovarysyndrome(PCOS) #Hyperparathyroidism #ThyroidCancer #Cardiomyopathy #CardiovascularDisease #CongenitalVascularCavernousMalformations

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Congenital Birth Defect and Lonliness, Young Adult

Hi there,

My name is Theo and I'm currently a freshman in
college. I was born with an extremely rare birth defect called a type three laryngeal
cleft. I had my cleft repaired for the third time
about three months ago; I was in pretty
significant isolation during the summer as I
needed to limit my talking and couldn’t afford to get sick. I was extremely
excited for college, but unfortunately came down with a nasty case of COVID the first week. The repair failed due to coughing and I’ll have to undergo another surgery in early January. I'm
heartbroken and feel totally defeated. Being
isolated for 7 months sounds depressing
and demoralizing. None of my peers have ever
heard of a laryngeal cleft, much less know how to support me. No one I know can relate to having 12 surgeries and the toll that comes with them. So overall, I'm feeling a little lonley, fragile, and cheated. I would love to chat with/hear other peoples' stories! #MightyTogether #LaryngealCleft #RareDisease #Lonliness #BirthDefect


How to cope when you feel the burden of your disease is all on yourself?

A wonderful person on here gave great advice that knowledge is power. It feels very true for fibro at least for me. Along with a recent diagnosis of fibro, I also deal with OCD, Anxiety, & Depression. I also deal with recent diagnosis of PTSD & a birth defect in my kidney.

I recently had surgery on my kidney 4 days ago. I told the doctor that I had fibromyalgia before the surgery. Unfortunately, I just googled today surgery and fibromyalgia. I feel irritated with myself because now I’m in a lot of pain and I just found out there were things I could suggest to my doctor to decrease my pain. Like local anesthetic into injection sites and magnesium drip so I didn’t have to wake up from anesthesia with so much muscle cramp pain.

I feel irritated with my doctor that she didn’t know these things but as a healthcare professional I understand why.

I just feel like I have to know everything all the time and it’s exhausting, lonely, and disheartening. #Fibromyalgia #Surgery #DaVinciSurgery

3 reactions 4 comments

Difficult News

I had an x-ray done on my hips on the 20th and I got the results yesterday. I have a birth defect with both hips called hip impingement. It's causing damage to the ball joints I think. I haven't talked to the doctor yet about what's going on but that's tomorrow. I have to find an orthopedist so I can figure out what I'm supposed to do next. Treatment is typically physical therapy, injections, and sometimes surgery to do hip replacements. I wish I wasn't sick anymore but it's nice to know why I'm having such bad hip pain and why I've had hip pain for such a long time


Answer you do not want but get

I have a birth defect of the heart, that I found out at the age of 52. During the past 4 years I have had 19 cardiac surgeries, and 13 stents. I live with heart attack symptoms every day and have wanted my life to end. I just had my last cath on Monday, but before the surgery, I did not know what I was going to do if he could not fix anything- I thought the worse. Well I got the news that I didn’t want to hear - they cannot fix my heart. I was crying at first, then I realized that I no longer have to o have hope for a fix, and no one can give me any false hope. It was a relief if anything. Only 3 ways that my heart can be fixed - technology that hasn’t been developed yet, transplant, or death.


How to cope with ptsd while experiencing acute illness and pain?

I was recently diagnosed with chronic ptsd after the memories of my childhood abuse resurfaced. Around the same time, I was diagnosed with a birth defect in my kidney (supposedly it’s rare to diagnose this defect in adults). The birth defect has contributed to swelling in my kidney causing a lot of back pain. Last week, they placed a stent in my kidney. one of the side effects of the stent is bladder spasms and cramping. I take pain medicine but when I get a random really painful flare up it triggers the memories of my childhood sexual abuse. It has been hard to ground myself lately because when I bring myself to the present, I come back to the physical pain. Strong pain medicine helps in those times but the emotions from the flashbacks are hard to calm down. Does anyone have any suggestions or resources? Thank you ❤️