Adult with Repaired Severe Bilateral Clubfeet
69 yrs. Ago, I was born in Hartford, CT. With severe bilateral clubfeet that were turned completely inward. My treatment started with casting at 3 mos., quickly moved to surgical repair 12 time and the...
View ArticleTrying to see the positives
Hello, this is my first post at this site. My wife and I are in the process to adopt (13 months, 9 months corrected) and have been presented with an opportunity which we are very seriously...
View ArticleNew to forum
I was had an "Upside down stomach" at birth....10 days old. I was given up for dead but my father said he grabbed me up and took me to a city hospital and here I am at 66. My intestines are still...
View ArticleLooking for someone with a similar experience
This is very difficult for me. On March 26th I went into labor very unexpectedly at 28 weeks pregnant. Up until that point we thought we were having a normal, healthy baby. Our daughter, Kara, was born...
View ArticleMy unborn children will be born early!
They are both measuring small! Like they were 2 weeks younger (in the womb) than they should. They are due Oocrober, but will be born in 2 1\2 weeks. I can't believe they will be premature like my...
View ArticleLooking for someone dealing with premie epilepsy, chiari malformation
My 4-year-old daughter was born 8 weeks premature. Recently, she was diagnosed with generalized epilepsy with focal seizures with altered awareness.In addition, they found that she has chiari type 1...
View ArticleDelayed Myelination - Share your story .
Hi all,I am a first time mom of a very beautiful baby girl, now 13months old. She was born at 34wks as she was an IUGR (Intra uterine growth restriction) baby. After birth her growth was still slow and...
View ArticleBirth Defects Awareness- My story
January is birth defects awareness month, and this is my personal experience as a birth defects parent. Please share your story here and offer support to others that may have a similar experience. In...
View ArticleBirth Defects Awareness Month - Share Your Story
January is Birth Defects Awareness Month. Has birth defects touched your life? If so, this is a safe place to join in a discussion and/or share your story. On a hot August day, nearly 8 years ago,...
View ArticleAutism linked to antidepressant use survey
Hello, my name is Cheyanne Johnson. I am a senior at JW MItchell High School and am taking part in the AP Capstone Research Program in my school. As part of the program, I must conduct research on...
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Practically Perfect in Every Way: Birth Defect affected families check in...
Having a child or family member with a birth defect brings its own uniqueness to our stories. Chat with other parents and family members and share your story.
View ArticlePosterior urethral valves and kidney failure
Hi, My oldest had PUVs (posterior urethral valves) and was born with kidney failure and a damaged urinary tract. He survived against the odds and will be 21 this April! I hope it is ok to post a link,...
View ArticleIn the NICU...
I would like to know what recommendations you experienced mommies have for managing time in the NICU. My daughter has been in NICU for about 2 1/2 weeks so far (we are now in our 2nd hospital) and I am...
View ArticleChronic Pulmonary Disease
I was told that my 23 weeker will have/does have Chronic Pulmonary Disease due to immature lungs and being born so early. Does anyone have any experience with this? I know some of this is irreversible...
View ArticleIntestinal malrortation, heart outside the body, club foot and extreme curve...
Hello everyone I am hoping someone will be able to help me with some answers to were I can take my daughter to be seen that may be able to help with at least trying to save my grandsons life once...
View ArticleDiaphragmatic Hernia and Down Syndrome Risk
I want to know if there is anyone out there that has had a baby with a diaphragmatic hernia that has survived surgery, thrived, and conquered. I am six months pregnant and am terrified at my baby...
View ArticleChromosome 6q deletion from 6q25 and duplicate of chromosome 12p
Hi. If anyone has any information on this unique chromosome 6q deletion from 6q25 and chromosome 12p duplicate please message me, I would like to talk. Thank you.
View ArticleDuodenal atresia in relation with overweight/obesity?
Dear all, Some of you will know my story, so a little update. We are from the Netherlands and our 4th daughter was born with da. Because of many complications she had in the first 3 years of her life 4...
View ArticleVery RARE Brain Birth Defect PLEASE HELP! :(
Hi, my name is Nicole and my boyfriends name is Derek. I am 35 weeks pregnant and at 32 weeks we received some devastating news. Our unborn child Aiden has fluid in the ventricles in his brain. I was...
View ArticleLimb defects
I'm 32 weeks pregnant with my first child and halfway through my pregnancy I found out my baby will be born with a birth defect - he is missing one of the major bones in his lower right leg. The...
View ArticleWiedemann Steiner Syndrome
I just found out there's another family in RI with a diagnosis of my daughter's rare condition, Wiedemann Steiner Syndrome. NOW TO FIND THEM......They aren't part of the WSS Facebook support group,...
View ArticleHYERCOILED CORD
Hi everyone! I am very new to this site and i just wanted to know if there had also been similar cases of what happened to my daughter 3 wks ago. Doctors said the cause of my daughter's demise at 32...
View ArticleGastroschisis
We are young first parents, who found out our baby has a gastroschisis. He has been in the hospital for 24 days. We are having a lot of trouble with finding ways to visit him, have time to ourselves...
View ArticleTerbutaline for Premature Labor
I am seeking further information regarding Learning Disabilities from taking the medication to stop premature delivery. Research shows that cognitive, speech and learning disabilities have been linked...
View Article4 months pregnancy loss. Looking for similar experience
Was 4 months pregnant. Thought everything was alright the whole time .. I went to a different OB then I usually do and the sonotech found a lot of issues. I was told to come back the next day to...
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