sharon19753 days ago
My 3 week old daughter had been diagnosed as BWS she had an omphlas at birth which has been put in thro surgery still waiting to see her do...
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SarahMorgan2 months ago
Hi. It's scary when you first get the diagnosis but it really does get easier. The first year is probably the hardest as you come to terms w...
Sharron164 months ago
Hi all had my sons genetic tests back he has been confirmed with having BWS. Genetics dr said a lot to me and was hard to take in to be hone...
Mistiwhitehead5 months ago
Good morning..who's here? My daughter was recently diagnosed with BWS.
Hi new here from England!
Sharron165 months agoPOPULAR
Hi i'm Sharron My son is 7 months old and we are currently waiting genetic blood tests back to see if he has BWS. He has already been diagno...
My bws 42 years later
sanjay436 months ago
daughter waseathek them four month bthe doctor who delivered hero send her right away to Chapel Hill in North Carolina where we live the pe...
6 Replies1 Like
NoahsMummy17 months ago
Hi, my name is Nic and I have a wonderful 6 yr old diagnosed with BWS immediately after birth and confirmed shortly after. If anyone would ...
5 Replies6 Likes
Hello all please help
charlilriley8 months ago
charlilrileycharlilriley 4 months ago 0 Replies
Hi all, my son turned 2 last friday, on monday we were told he has cystic kidney disease (due...
BWS Support for BabyJaG
Babyjag8 months ago
Hi everyone, my baby was just diagnosed with BWS and I must admit I've been a nervous wreck the last few days after the diagnosis. I'm hopi...
2 Replies1 Like
What are the chances of 2nd baby having BWS
Mspell229 months ago
Hi my name it's Mary I'm 26, I have a 7 yr old with BWS, she was diagnosed with BWS while I was 4 months pregnant. She's had a lot of medica...
6 yr old with BWS diagnosed at 3 weeks of age
Liam201010 months ago
Hi everyone, my son, Liam is 6 and s BWS which was diagnosed at 3 weeks of age. He is considered to have a "mild" case and has been monitore...
paska10 months ago
Hello...My Name is Pasha and I live in Uganda.
I have a daughter that might have BWS..she was born with an omphalocele that was repaired soon...
Asking about Tongue reduction surgery places.. Other than Gosh
Gloria210 months ago
I have a 4 months old baby with Bws and macroglossia.. wish to have the surgery for her in 2 months..
I have been mailing GOSH for ...
Just Found Out About BWS
danielb59a year ago
I am a 68 year old male in the U.S. I had macroglassia as a newborn along with the strawberry forehead mark and a hernia. The macroglassia ...
3 Replies4 Likes
Cystic kidney disease (bws)
charlilrileya year ago
Hi all, my son turned 2 last friday, on monday we were told he has cystic kidney disease (due to the bws) he already had bilateral hydrophro...
hemihypertrophy and BWS
Alina_na year ago
My son has 3 years old age and he has BWS. We didn't know about this syndrom until now.
We received the results from genetic test a month ago...
Rise and fall of AFP
cmr2010a year ago
Hi! My son is 22 months, and so far has only been diagnosed with hemihypertrophy. We have started the BWS tests through our geneticist, but ...
Gentle reminder from BWS admin
daisyducka year ago
Note to all members.
Please bear in mind that this site is for parents to collaborate with one another and share experiences and advice. It i...
Ssteudeman92a year ago
Hi my daughter was clinically diagnosed with bws we r waiting on the blood results to conform it she is five months old and I was wondering ...
chloesmamaxoa year ago
so we went to the pediatrician and were told he'd like our 5 month old to get tested for BWS. I ran into an article about bws and brought up...
bws with incontinence
mychilda year ago
Hi , my child has BWS and she is currently suffering from incontinence she has done a ultrasound to her bladder and was normal , has anyone ...
BWS Teen with calcification in kidneys
AkRosannaa year ago
We just found out that I was supposed to be doing an annual screening for calcification in the kidneys. I hadn't done any screenings...
Tongue reduction for adults
BobBakera year ago
Have just had an enquiry from someone who has suffered from macroglossia for around 50 years. Is anyone aware of a tongue reduction operatio...
Is it BWS?
Jofusa year ago
Hi, I've just joined the group looking for answers as my son doesn't have a diagnosis but he has so many characteristics of BWS.
Teenager with BWS
vetsjs1a year ago
Hello, my son was diagnosed(presumptively with BWS at around 6 months of age) There was no test available at the time. His blood was banked ...
Beckwith widermann syndrome child
ayuza year ago
Hello and good morning friend,my name is ayu..i'm from malaysia..actually i just want to share about all my child have genetic disorder and ...
Breakdown of genetic results
Marie-2004a year ago
My son was born in Dec 2015 and diagnosed in February with BWS. I have seen a number of mention about sub groups of the BWS genetic di...
Have just had an email from a parent and wonder if anyone can help. The question raised is as follows:
My question pertains to his growth. n...
3 Replies1 Like
Any clear answers would be appreciated on enlarged organs!
Mandrewsfreda year ago
Have a few questions that haven't been answered satisfactory by any of our physicians and hope some one with more knowledge could help! My d...
I have just had an enquiry from a mother of a 16 year old who has hemihpertrophy. She has a difference of some 4 centimetres in her leg leng...
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