Birth Defect

Create a new post for topic
Join the Conversation on
Birth Defect
759 people
0 stories
63 posts
About Birth Defect Show topic details
Explore Our Newsletters
What's New in Birth Defect
All
Stories
Posts
Videos
Latest
Trending
Post

Is it me??

#Anxiety . I’ve been staying at my daughters because I broke my right hand and am missing most of my left hand due to a birth defect. Mostly she’s been very caring, helping me and taking me to appointments and helping with tasks it is difficult or impossible to do. But twice in the last couple of weeks I’ve been here, she’s vehemently accused me of gaslighting. Apparently her new therapist diagnosed me as gaslighting her. Or she lied to her. I don’t know. If I disagree with her about anything, she flares up. This is a relationship that has been very difficult. My bipolar II changed into Bipolar 1 after postpartum kicked it into overdrive. I am already wanting to leave especially when she has said three times “we need to establish an end date for you to be here” and then when I say ok, she accuses me of getting all better (not so) and leaving when I don’t need her, and upsetting the kids. I’m not arguing or saying anything to or around the kids. My car is in the shop near here (I live 45 miles away), so I have no car until 9/6. I’m told to call my son, who she has always said I favored, or she’ll drop me off at my apartment (alone and with no car). I have agreed to go if she wants me to but that is completely turned around as though I’m leaving on purpose,etc thanks for listening. I’m 70 and my daughter is 36. If I have to I’ll stay with my son. Never again at her house. #BipolarDepression

Most common user reactionsMost common user reactions 27 reactions 11 comments
Post
See full photo

#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.

Post
See full photo

✨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

Most common user reactions 2 reactions
Post

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

#MightyTogether

Most common user reactionsMost common user reactionsMost common user reactions 3 reactions 1 comment
Post

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

Most common user reactions 9 reactions 3 comments
Post

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

2 comments
Post

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

Most common user reactions 3 reactions 4 comments
Post

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

Post

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.