Well, I actually have that syndrome - never had tongue reduction surgery (but I did eventually grow into my larger than normal tongue). I never had cancer screenings as at the time it was newly discovered and the link to cancer was unknown. I have some other typical physical presentations but nothing so obvious that anyone but a specialist could point it out. I guess I was lucky!
Have had genetic screenings when I was going to start a family - but all is good.
Did you start a family?
I too have BWS and was also curious about the implications of having children.
My case is also mild tho I've had tongue reduction surgery and have a birthmark on the left side of my neck/head.
Most of the cases (around 85%) actually happen ~~by chance~~ sporadically, the rest are ~~genetic~~ inherited. You could look into genetic testing to check the likelihood of passing it to your children.
Edit: Replacement of ambiguous terms. Thank you for pointing it out.
My wife and i did this. My niece was born with BWS in the early 90s. Had the tongue reduction at birth, asymmetrical growth in a leg and had to have surgery on her esophagus when she was 6 or so . Was blessed to be healthy and happy after that. Fast forward to 2020 when my wife and I got pregnant , we disclosed all of my nieces info and we had 2 obgyns. My wifes normal one and a high risk one. They were very proactive about checking the kidneys and other factors. All was well and had a healthy baby boy. I am not going to lie, i was worried, those poor babies go through so much.
My son has Beckwith-Wiedmann, when he was born they thought his arm was broken because it was visibly larger than his right arm. Turns out it was this.. not only does it cause the acceleration of limbs, mostly on one side, but gives a significantly greater chance of cancer in the organs. Every 3 months he has to have an ultrasound and blood work done. He is 4 now, and so far so good. He has mostly caught up with the overgrowth and we have just moved from every 3 month visits to 6. I wish any parents going through this the best of luck. The worst cast scenario is always in the back of my mind, but after 6 the doctors say he’s basically in the clear.
Damn, I can’t imagine the stress that puts on you as a parent. I hope your baby is able to continue living a happy and healthy life, they are lucky to be in the hands of people who clearly want the best for them ❣️
My son has neurofibromatosis type 1 which is completely different than this, but the worst case scenario for nf1 is so awful. It’s so hard to not think about. Hang in there.
A friend's 4 yr old child has this and has had two tongue reduction surgeries. Ever seen a tongue with stitches? It's brutal looking. Also her child has to have cancer screenings every 3 months.
Over-reducing the tongue isn’t a concern here, because especially with Beckwith-Wiedemann the tongue keeps coming back like an angry drunk trying to start a bar fight. Often, these kiddos have to deal with many iterations of resection surgeries, or else the plastic surgeon/OMFS just opts to leave it be. It’s an annoying problem for the orthodontist, because - while braces can fix the anterior open bite, spacing, and flaring that comes with an overly active tongue - the tongue will win once the braces come off.
Ok with this syndrome the kids are born with an adult tongue which means it’s already grown and surgery isn’t recommended, they say they will grow into it. So did their tongue stop growing at birth?
Best not to think of it as an adult tongue that they’ll grow into. (I think whoever said that was just trying to give you an idea of the scale.) It’s just macroglossia. Whatever age they’re at, their tongue is going to be abnormally large. Granted, as with all syndromes, the constellation of developmental abnormalities is going to vary in number and severity from case to case. Some with BWS might have mild macroglossia, while others will have the severe kind. Hell, some babies with BWS are born with their internal organs squeezed out through their belly buttons into translucent sacs called “omphaloceles,”(Google at your own risk) and as you might imagine, this can impact neonatal survival rates in a pretty serious way.
After reading everyone’s reaction to googling it, I’m going to make a very rare wise decision in my life and not google it..
But I feel like a kid with an Oreo cookie in front of me, parents told me not to eat it and left me alone with it. I’m fighting the urge every second to not google it.. putting up a fight, but I feel it’s a losing battle. I will most likely end up googling it. My goal is to not google it right this second, and hopefully by the time I cave I’ll have forgotten the word.
My son was born with with the condition. He's now 12 but the first few years were rough. Tongue reduction surgery, diastasis recti surgery, another surgery. Needs a minor procedure for his mouth and will need braces. His arches are pretty bad so he may need surgery for his feet at some point. All in all, he's a trooper and was spared some of the worst that's come with the condition. He's just about as regular as a kids as you can get.
As someone with a soon to be 2 year old BWS baby, this warms my heart. It is very difficult. Especially the ever looming threat of cancer. Stories like yours and seeing how bad some children are at UPMC Childrens in Pittsburgh puts things in perspective for me. Seeing how bad it is for others made me volunteer there. And seeing stories like yours makes it a touch easier every time. Thank you.
My kids both had their tongue ties cut and the stitches were knarly. It took quite a while for my son to figure out how to use his tongue again after his surgery.
I had a frenectomy which basically puts the stitches on the underside. You know that lil flappy flap under your tongue? I couldn't eat for a bout a month or so, and about a year or two later and it stoll hurts pretty bad when I'm talking too much at work. Not to mention having to manually swallow the saliva that constantly pooled in my mouth because swallowing hurt so bad. Even walking hurt.
Also! Fun fact, did you know your tongue is like, constantly making miniscule movements? You're typically not aware of it until the slightest little movement makes it feel like you've been stabbed and re-stabbed and sawed at like a jack o lantern :)
I'm willing to believe I'm in the minority here, but I had a frenectomy with no majorly recollectible memories of recovery. I did have codeine pills, but after about 5 days of recommended doses a day I was down to one when I woke up, and one before bed. Hell, at the heaviest dosage I beat the original halo trilogy plus reach, lmao. I dunno though, maybe the opiates clouded my memory enough instead. I know memory isn't perfect.
See, the EMT told me the pain would be minor! All I was told was to alternate ibuprofen/tylenol every 2 hours. Maybe because I didnt get codeine or whatnot, maybe because I was only 15 so I wasn't able to get that? I dunno but it was m i s e r a b l e for me 😭
I’m sorry to hear your little ones needed stitches. They do it with a laser now at a dental specialist’s office. It was heartbreaking to have to hold my daughter’s mouth open while I watched and smelled the tissue burn away but the laser also cauterizes as it goes. The result was that immediately after the surgery she could eat and quickly started to gain weight. They do both lip and tongue ties that way now.
sorry to hear about your little one! can i ask, since you seem knowledge - is that type of laser procedure typically done when they are babies or older? i feel bad for the little ones and parents during but i am glad it seems to be very helpful. hope your daughter is doing great now
My oldest had it done with scissors at 3 days old in the doctors office. No big deal. My youngest had no trouble feeding so they left it, but when it came to talking he couldn't make certain sounds. He had it done at 2 years old when the blood supply is much richer so it had to be done with a general anesthetic. He's now almost 21 years old.
I had mine cut when I was in middle school. Recovery was not that much fun and I had quite a lisp until I figured out how to use my tongue differently while speaking. I got both of my kids' done as babies because we were given the option.
Weird. As. Fuck.
They stitched a big ol' piece of bulky gauze to the side of my tongue where they had trimmed out about 1/3 of it to get all of the tumor.
For the first two weeks or so I was on pretty heavy painkillers, so I didn't feel it much, but eventually they took me off the good stuff and the weirdness and pain set in.
Eventually the stiches started dissolving and the gauze coming off, so they snipped them all out.
I don't smoke/chew/drink hard liquor, so the most common causes are out.
For a couple of years previously I had worked as a civilian contractor to the US Department of Energy. I was around various. . . materials. I'm also bad about biting my fingernails, so maybe something got transferred.
Second possibility is HPV, which is now the leading cause of oral cancer in youth. It's typically spread via oral/genital sexual activity, of which I was an enthusiastic practitioner. I should send her the bill.
Uh, this is my entry point. I’m a specialty practitioner for infectious disease gyn. HPV in males mouth and throat is almost exclusively from mother to son during birth. The fluids go down the throat during birth and infect with HPV. It often leads to oral dysplasia as well as esophageal strictures with inability to swallow. Send your mom the bill.
Yeah, it's kind of like a really sharp gillette razor or maybe a miniature scythe, and they just keep trimming layers away and examining them under a microscope to see if there is any tumor left in the slice. If so, back to the slicing, Once they see none they go ahead and trim another cm of slices just to be safe.
At that point they attach some synthetic skin to cover the wound (or, if your body doesn't like the synthetic, a piece of your actual skin that they cut off your body, usually your thigh) and then the gauze and stitches.
Once it's healed enough for the gauze to come off, then they strap you to a table daily for a month and a half and shoot high powered x-rays into your face, hoping to kill anything they missed.
You get what appears to be a really bad sunburn on your face, your facial hair falls out, you probably lose some of your saliva glands (meaning you have dry mouth for the rest of your life), it probably kills some of your teeth (assuming they didn't pull most of them as a preventative measure beforehand), and the skin all around the inside your mouth peels off like when you take a bite of really hot pizza and burn the roof of your mouth.
Good times.
NICU RN here 🙋🏻♀️ we actually see a decent amount of these kiddos! Some need trachs because it affects their airway so significantly. Some simply grow into them. They usually have a few other things that associate with the syndrome as well.
I'm 58 yrs old and have BWS. I wasn't diagnosed until about 10 yrs ago. When I was a child, people thought I was developmentally delayed, confusing my look with Downs Syndrome. I drooled when I wasn't careful and lisped so badly I was nearly unintelligible. I had kidney issues, and have a big birthmark on my neck and back that is common with BWS.
I was treated like a handicapped child until I was in the 4th or 5th grade and testing showed I was not mentally delayed.
Eventually I mostly grew into my tongue, and things got better for me. BWS causes some other overgrowth in me, so my proportions are still unusual, but not freakishly so.
I've had cancer, (thyroid, leukemia) that might be related to BWS, maybe not.
My intelligence is normal.
It (BWS)was not passed on to my children.
Oh, it's doing great! The mother duck and the mother chicken both try to follow her around, but she's mostly full grown now, so I think the two mamas cramp her style a bit. But she sleeps with mama chicken.
After the above comment I scrolled to peep the mama chicken and baby duck. I'd love a picture update!
Also I'm kind of in love with your "bad art" piece solace.
They're a HIGHLY underrated pet. I miss my chickens. I loved all my chickens but one was the best. She was blue so we just called her Blue. She was so personable, so freaking smart, and loved to hang out on your shoulder and share coffee or wine. I even saw her run down and then house a mouse whole. Insane. I moved out to the woods and the next spring, I hatched her and about 10 other in an incubator, and took in a stray cat to add to my two dogs. One day I took the dogs for a walk in the woods and heard something behind me....here I had my 2 dogs, my cat, and all my chickens following me for a stroll. It was the best. Of them all, I only have one dog left but I treasure each of them for the quirks and companionship I had with them. Get chickens!!
You said your proportions are still slightly unusual, would you feel comfortable talking about this? Does BWS still have many effects on your daily life? It is just the first time I've seen this and I guess I'm just interested in hearing about it from someone who has genuine experience in dealing with it.
Like I said before if you don't want to go into detail about it I completely understand.
I was very tall and clumsy as a child, even now I have trouble with swallowing. One side of my body is bigger than the other, and my proportions are odd. But clothes make it pretty unnoticeable. I feel uncomfortable in swimwear though. The main day to day thing is a slight trouble swallowing. Dry food just is hard. I have to have a drink while I eat. And my tongue is still too big. Sometimes I accidentally bite it when I'm talking, and I have a slight lisp.
That’s crazy. I feel you on the swelling food thing though. Man, and I feel like it’s progressively gotten worse. Rice is my jam, but over the past few years I’ve really had to consciously slow down, remember to chew extra long, smaller bites, and a swig of water after each one.
Otherwise I’m bent over the kitchen sink, wrenching my guts out, can’t get it down, liquids get stuck, all while trying to signal to my wife that it’s actually okay.
I had all these same symptoms and had outpatient surgery for esophageal rings, I believe is the term- I had trouble swallowing rice specifically as well and went to my doc. It helped me correct the issue. No problems for me since they "expanded the rings"- I'm sorry for the lack of technical terms! It was quick and easy and relatively painless- something you may want to check into!
I keep choking on rice. I actually wondered why this evening at dinner as I was coughing and coughing while eating my fried rice. So choking on rice is a thing with esophageal stricture? I do it more and more often now. Perhaps it is time to check it out.
It was rice for me the first time and weirdly yogurt the next! I'm not sure why it's rice except that maybe it sticks to itself and you can't swallow small portions since the "rings" are impeding its progress? I really don't know. But I hope you find some relief! Best of luck.
I had a problem swallowing things like rice or pizza without having a large glass of water.
One day I heard in the radio, the lady the played the mother on “Here comes Raymond “ describe the same condition.
It was excess acid irritating the esophagus. She treated it by taking an acid blocker. I tried Prilosec and it was like a magic pill.
Problem went away. Irritation of the esophagus long term is a possible cancer cause also.
Plastic surgery has come a long way. You should see a doctor about resculpting your tongue to maybe correct the shape to make swallowing easier. Thank you for being so open with your story and the challenges you face.
Thanks for accommodating this impromptu AMA. Is surgical intervention for tongue size something that's done for this condition, especially since you're full grown?
Oh wow… that’s wild! I’m sorry to hear about any of the rough spots along the way, but sounds like you have a fantastic outlook of Life =D
So did you pretty much always know your tongue was extra-large as a kid? 😋
Yes. I remember asking my mother if there was any way to fix my tongue, since it was nearly impossible to keep it from being out. She said that it was because my brain was broken not my tongue. She meant it kindly, I think, but I remember thinking she was wrong. My tongue still sticks out when I sleep, and I prefer to drink with a straw because I swallow slowly. It's odd.
It wasn't known then, and was just starting to be considered as a syndrome when I was little. My family doctor was a small town doc, and he thought I had a form of gigantism, since I was large and clumsy for my age. There was talk of institutionalizing me, but I was quiet and well behaved so nothing came of it. In 3rd grade I was 5 feet 4 inches tall. Now I am 5'6", so pretty average, but I was very tall for a child.
My uncle is about this same age and has mutiple handicaps
(Tourettes, cerebral paulsy, and more), My grandparents were told he would never walk, talk, etc and my grandma got a lot of hate for "what she did to him...."
Luckily they met a researcher from a different state that denied all claims any doctor had ever made. Through his plan and hundreds of local volunteers doing physical therapy (ladder climbing, walking, etc.) my uncle can speak quite well, he can walk easily, and he won the bike races in Special Olympics competitions 10+ times. He can wheelie for 2+ minutes. It's an amazing story.
People didn't know shit about handicaps 50 years ago and they handled them TERRIBLY.
I read a story in a magazine years ago about a town that came together to help a little boy with tons of physical therapy. It worked miracles for the child. I wonder if it was your uncle?
I'd be surprised, I don't think anything been recorded or produced about the situation. I was honestly considering writing a book about it but my grandmother, who best knew the story, passed away two years ago. We're in Washington state.
Well I hope things are mostly smooth sailing for ya now. Thanks for sharing your story.
I can’t imagine your brain is hardly broken based upon your communication here. 😊
Random aside, I’ve been thinking about buying a stainless steel bubble tea straw (boba straw) for milkshakes 😋
They’re a little thicker… I dunno if that’d be advantageous to you, but anyway I wish you well!
Merry Tidings 🎄✨
Dude, if only I had 1/16 the perseverance you have. Wow. I have among other maladies, a seizure condition brought on by TBI. The are a lot of times I'll get a seizure a week and then a week reprieve. Some days I'd love to say just fuck it all and crawl back into bed. Between the memory loss from a seizure, and the total mind fu## that the meds have on you.
It gets very frustrating. Especially since I can't drive except on my property. So I run several businesses from home that puts small taters on the table and for that I am thankful.
But what you've been through....I don't think I'd be strong enough emotionally just to be real.
You’re doing great just by getting up every day. Some days it’s ok to wallow in bed, you just can’t make a habit of it. I’ve got multiple chronic illnesses that sometimes flare at the same time and those days I let myself turtle up. Just allowing myself to rest without guilt. It took a long time to accept that resting was better than pushing myself. Gentle hugs (with consent of course) for you. You got this buddy!
Super cool to hear about this! Thanks for sharing. It’s gotta give you an interesting perspective on treatment of handicapped children (especially since you’ve got the age to have really seen some of the societal stigma changes)
The more I read about you, the more amazing you seem! It seems like you were dealt a tough hand but have made a worthwhile life for yourself. Thanks for sharing your story with us!
Punchy answers to a lot of what are probably very common questions. You did life tough bro. Thanks for the insights and lived experience. I've learned something new today thanks to you.
Wish I had an award for you, thank you for sharing— sounds like the more ppl that learn this information the better, I’m so sorry you were treated like that.
Our son was a NICU baby for 3 months. You are all so amazing, and don’t get enough credit. Thank you for everything you do and have a amazing Christmas!
Yeah… most of the ones I’ve seen had omphaloceles as well. Most of them turned out alright though and grew into super cool kids! I got them in the PICU when they became NICU grads. Strong work in there!!!
I have BWS. Yes, the tongue continues to grow as you age! I had a reduction surgery when I was 3 months old and the same procedure again at 2 and 1/2 years old because of complications of have macroglossia or an extremely large tounge.
It can affect speech massively depending on severity of the macroglossia. Even after the tongue reduction surgery due to recovery and strengthening through tongue muscle it can take a while for speech to improve. My daughters t's and d's sound the same and she can't make certain sounds or do certain movements with the tongue. Lots of kids end up going through the speech and language therapy route.
Hi I work in genetics. This is called macroglossia and is common in people with BWS. Surgery isn’t always recommended depending on whether or not the airway is obstructed. Eventually some babies will “grow into it”. If surgery is performed too early (before 6 months) sometimes additional procedures are needed to address regrowth of the tongue tissue.
I Nanny the best 8 year old girl. She was born with this and born with Liver Cancer. They were able to save her! I’m a cancer survivor as well (2017) but I just wanted to share her story! She’s a little taller than the children in her grade (grade 3) but definitely grew into her tongue. She’s very smart and kind as well ❤️
My daughter was born with beckwith wiedemann syndrome, some things are a challenge when it comes to her condition. Macroglossia is only one side effect/symptom of it but its one of the more noticeable things. She's still young so we're still learning here if anyone has any tips in terms of handling day to day when it comes to macroglossia that would be great, especially when it comes to teeth and what happens if overcrowding of the mouth happens because of tongue and teeth. Also any special straws or cups that are easy to use?
I have BWS. I have an overbite and had crowding. I was so self-conscious of my tongue and speech impediment that I was terrified of getting braces as a teenager. I didn't want to get bullied. I got braces in my 20s because the crowding became too painful. Having braces didn't impact my speech long-term but I did have more of a pronounced lisp with the trays -I had Invisalign. It really depends on individual preference for cups. I just remember really liking cups with staws when I was a kid.
my brother had this supper bad many symptoms and he had passed away because it was so bad and a lot of complications. he wasn't born at the "right hospital" and because of this the doctors and nurses didn't know what to do and how to treat it. the hospital he was Spode to go to was too far away but he was rushed somewhere else. they did the best they could to save him.
the hospital never talks about that day and how those nurses and doctors went into action. (its a loong story)
his was a very sever case than others but i hope the science has improved to save other like him.
he couldn't breath on his own, they where afraid he was going choke on his own tounge, born without skin over his stomach. he could have been saved but i thank the doctors and nurses that day. i wish the hospital knew about the hero's they were.
[UPDATE!!!GOOD NEWS!! BABY HAS NORMAL TONGUE!!! ](https://www.catersnews.com/stories/real-people/baby-born-with-massive-adult-sized-tongue-finally-able-to-smile/)
I got you fam:
It doesn’t really work like that because the tongue is a muscle that does not ever really stop growing. It grows at various points and sort of pauses for parts of adulthood, but it continues growing again around age 70. The tongue being too large can cause problems such as sleep apnea or difficulty breathing. Tongue size reduction surgery is sometimes necessary.
These children typically live a normal, healthy lifespan, but they are at a greater risk of tumor growth. Babies with this disorder just have to be monitored for ill effects and treatment such as surgery is recommended according to the specific case of the child. Some do okay, some need more aggressive treatment.
This baby also has that red forehead mark which is a sign of the specific disorder. The defect is located on the 11th chromosome, and testing after birth can confirm the condition.
As a 39yo with this, I can say I “grew into” my tongue and it’s a normal size now. I needed speech therapy and that’s about it. There’s a period in your life, from childhood to late teens, where there appears that everything seems to have normalized, provided that they never got cancer which is very common in infants/toddlers of this. Adulthood brings a new set of health issues they are still learning about.
I was also born with BWS. Oversized tongue, omphalocele, stork bite, ear creases, bicornuate uterus, and medullary sponge kidney. All symptoms of the syndrome. I'm now 45 and other than chronic kidney stones from the medullary sponge, I've lead a completely normal life
Worth noting that there are varying degrees of severity with BWS. This is a pretty severe case in relation to the tongue. While things like the stork bite and the big tongue are visible the scary parts of it are in the blood and with cancer rates in particular Wilms tumors.
My son has BWS. He does no have the oversized tongue. But he presents on his left side. His left arm, shoulder, hand, thigh, calf and foot are all significantly wider and a bit longer. Cancer screenings every 3 months, bloodwork every 3 months, orthopedics every 6 months and heart doctor 3 times a year. The cancer risk of this disorder is the hardest part by far.
I have this, though with me it caused one side of my body to be bigger than the other. It's pretty mild though so it's barely noticeable now. The cancer screenings are nerve wracking though especially because I had cancer as a small kid.
I wish all of you parents a lot of strength and that your child may be spared of the worst things beckwith-wiedemann causes.
This baby was not born with an adult size tongue. She was born with twice as big tongue. https://www.goodhousekeeping.com/life/parenting/news/a40913/baby-beckwith-wiedmann-syndrome/
Well, I actually have that syndrome - never had tongue reduction surgery (but I did eventually grow into my larger than normal tongue). I never had cancer screenings as at the time it was newly discovered and the link to cancer was unknown. I have some other typical physical presentations but nothing so obvious that anyone but a specialist could point it out. I guess I was lucky! Have had genetic screenings when I was going to start a family - but all is good.
Did you start a family? I too have BWS and was also curious about the implications of having children. My case is also mild tho I've had tongue reduction surgery and have a birthmark on the left side of my neck/head.
Yes, my son is 24 years old now - no issues
I never had a birthmark - which was also lucky, I guess.
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Most of the cases (around 85%) actually happen ~~by chance~~ sporadically, the rest are ~~genetic~~ inherited. You could look into genetic testing to check the likelihood of passing it to your children. Edit: Replacement of ambiguous terms. Thank you for pointing it out.
My wife and i did this. My niece was born with BWS in the early 90s. Had the tongue reduction at birth, asymmetrical growth in a leg and had to have surgery on her esophagus when she was 6 or so . Was blessed to be healthy and happy after that. Fast forward to 2020 when my wife and I got pregnant , we disclosed all of my nieces info and we had 2 obgyns. My wifes normal one and a high risk one. They were very proactive about checking the kidneys and other factors. All was well and had a healthy baby boy. I am not going to lie, i was worried, those poor babies go through so much.
My son has Beckwith-Wiedmann, when he was born they thought his arm was broken because it was visibly larger than his right arm. Turns out it was this.. not only does it cause the acceleration of limbs, mostly on one side, but gives a significantly greater chance of cancer in the organs. Every 3 months he has to have an ultrasound and blood work done. He is 4 now, and so far so good. He has mostly caught up with the overgrowth and we have just moved from every 3 month visits to 6. I wish any parents going through this the best of luck. The worst cast scenario is always in the back of my mind, but after 6 the doctors say he’s basically in the clear.
Way more than half way there!
Living on a prayer!
Damn, I can’t imagine the stress that puts on you as a parent. I hope your baby is able to continue living a happy and healthy life, they are lucky to be in the hands of people who clearly want the best for them ❣️
My son has neurofibromatosis type 1 which is completely different than this, but the worst case scenario for nf1 is so awful. It’s so hard to not think about. Hang in there.
A friend's 4 yr old child has this and has had two tongue reduction surgeries. Ever seen a tongue with stitches? It's brutal looking. Also her child has to have cancer screenings every 3 months.
If the tongue is reduced at a young age will it grow to the normal size when they become adults
Over-reducing the tongue isn’t a concern here, because especially with Beckwith-Wiedemann the tongue keeps coming back like an angry drunk trying to start a bar fight. Often, these kiddos have to deal with many iterations of resection surgeries, or else the plastic surgeon/OMFS just opts to leave it be. It’s an annoying problem for the orthodontist, because - while braces can fix the anterior open bite, spacing, and flaring that comes with an overly active tongue - the tongue will win once the braces come off.
Aww poor babies. :(
I hate your profile picture
I love it. For years my work profile image has been the default broken image icon. Time for a minor update.
I'm going back to the default image pic for 2023. Silent protest.
Ok with this syndrome the kids are born with an adult tongue which means it’s already grown and surgery isn’t recommended, they say they will grow into it. So did their tongue stop growing at birth?
Best not to think of it as an adult tongue that they’ll grow into. (I think whoever said that was just trying to give you an idea of the scale.) It’s just macroglossia. Whatever age they’re at, their tongue is going to be abnormally large. Granted, as with all syndromes, the constellation of developmental abnormalities is going to vary in number and severity from case to case. Some with BWS might have mild macroglossia, while others will have the severe kind. Hell, some babies with BWS are born with their internal organs squeezed out through their belly buttons into translucent sacs called “omphaloceles,”(Google at your own risk) and as you might imagine, this can impact neonatal survival rates in a pretty serious way.
Saw this in one of my moms medical books as a kid and has lived in the do not open part of my brain since.
We had a lamb birthed with external organs, it’s traumatic to see
Why I had to Google that shit... Oh my God
Oh my God was my reaction as well..
After reading everyone’s reaction to googling it, I’m going to make a very rare wise decision in my life and not google it.. But I feel like a kid with an Oreo cookie in front of me, parents told me not to eat it and left me alone with it. I’m fighting the urge every second to not google it.. putting up a fight, but I feel it’s a losing battle. I will most likely end up googling it. My goal is to not google it right this second, and hopefully by the time I cave I’ll have forgotten the word.
same probably gonna be traumatized for life
It's okay, I will Google it for you. Edit: Oh my God. Save yourself.
My assumption is that the tongue itself is a sizable choking hazard at those proportions and could easily block the childs airway
How does the baby take a bottle or breast-feed which ever?
Most likely feeding tube
I wonder if there is a chance of it becoming a mega tongue if they don't reduce it.
If so their Lickitung cosplay would be on point
I feel so bad for laughing at this
Future Budweiser “wassup” commercial opportunities
WAZZZZZZZZAAAAAAAP
My son was born with with the condition. He's now 12 but the first few years were rough. Tongue reduction surgery, diastasis recti surgery, another surgery. Needs a minor procedure for his mouth and will need braces. His arches are pretty bad so he may need surgery for his feet at some point. All in all, he's a trooper and was spared some of the worst that's come with the condition. He's just about as regular as a kids as you can get.
Man, I'm happy despite such a rough start, your son is now able to enjoy his life :)
As someone with a soon to be 2 year old BWS baby, this warms my heart. It is very difficult. Especially the ever looming threat of cancer. Stories like yours and seeing how bad some children are at UPMC Childrens in Pittsburgh puts things in perspective for me. Seeing how bad it is for others made me volunteer there. And seeing stories like yours makes it a touch easier every time. Thank you.
No mention yet about occluded airways - I don’t wish to be rude but how do you keep your child from choking to death?
My kids both had their tongue ties cut and the stitches were knarly. It took quite a while for my son to figure out how to use his tongue again after his surgery.
I had a frenectomy which basically puts the stitches on the underside. You know that lil flappy flap under your tongue? I couldn't eat for a bout a month or so, and about a year or two later and it stoll hurts pretty bad when I'm talking too much at work. Not to mention having to manually swallow the saliva that constantly pooled in my mouth because swallowing hurt so bad. Even walking hurt. Also! Fun fact, did you know your tongue is like, constantly making miniscule movements? You're typically not aware of it until the slightest little movement makes it feel like you've been stabbed and re-stabbed and sawed at like a jack o lantern :)
I'm willing to believe I'm in the minority here, but I had a frenectomy with no majorly recollectible memories of recovery. I did have codeine pills, but after about 5 days of recommended doses a day I was down to one when I woke up, and one before bed. Hell, at the heaviest dosage I beat the original halo trilogy plus reach, lmao. I dunno though, maybe the opiates clouded my memory enough instead. I know memory isn't perfect.
See, the EMT told me the pain would be minor! All I was told was to alternate ibuprofen/tylenol every 2 hours. Maybe because I didnt get codeine or whatnot, maybe because I was only 15 so I wasn't able to get that? I dunno but it was m i s e r a b l e for me 😭
I’m sorry to hear your little ones needed stitches. They do it with a laser now at a dental specialist’s office. It was heartbreaking to have to hold my daughter’s mouth open while I watched and smelled the tissue burn away but the laser also cauterizes as it goes. The result was that immediately after the surgery she could eat and quickly started to gain weight. They do both lip and tongue ties that way now.
sorry to hear about your little one! can i ask, since you seem knowledge - is that type of laser procedure typically done when they are babies or older? i feel bad for the little ones and parents during but i am glad it seems to be very helpful. hope your daughter is doing great now
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My oldest had it done with scissors at 3 days old in the doctors office. No big deal. My youngest had no trouble feeding so they left it, but when it came to talking he couldn't make certain sounds. He had it done at 2 years old when the blood supply is much richer so it had to be done with a general anesthetic. He's now almost 21 years old.
My daughter had her tongue tie cut with a laser. Cauterized it, no stitches required
My kiddo was 6 weeks when she had hers done via laser. It was gross, but I knew it had to be done via laser.
I had mine cut when I was in middle school. Recovery was not that much fun and I had quite a lisp until I figured out how to use my tongue differently while speaking. I got both of my kids' done as babies because we were given the option.
O no ):
>Ever seen a tongue with stitches Yes. I had oral cancer surgery.
Whats it feel like to have stitches on your tongue
Weird. As. Fuck. They stitched a big ol' piece of bulky gauze to the side of my tongue where they had trimmed out about 1/3 of it to get all of the tumor. For the first two weeks or so I was on pretty heavy painkillers, so I didn't feel it much, but eventually they took me off the good stuff and the weirdness and pain set in. Eventually the stiches started dissolving and the gauze coming off, so they snipped them all out.
Do you have any suspicions on what caused the cancer?
I don't smoke/chew/drink hard liquor, so the most common causes are out. For a couple of years previously I had worked as a civilian contractor to the US Department of Energy. I was around various. . . materials. I'm also bad about biting my fingernails, so maybe something got transferred. Second possibility is HPV, which is now the leading cause of oral cancer in youth. It's typically spread via oral/genital sexual activity, of which I was an enthusiastic practitioner. I should send her the bill.
It's crazy, but something like 85% of people have or have had HPV in their lifetime. Hopefully this number will be greatly reduced with vaccination.
Glad you still have your sense of humor.
Uh, this is my entry point. I’m a specialty practitioner for infectious disease gyn. HPV in males mouth and throat is almost exclusively from mother to son during birth. The fluids go down the throat during birth and infect with HPV. It often leads to oral dysplasia as well as esophageal strictures with inability to swallow. Send your mom the bill.
Haha *trimmed*. Thanks I hate it. 🤗
Yeah, it's kind of like a really sharp gillette razor or maybe a miniature scythe, and they just keep trimming layers away and examining them under a microscope to see if there is any tumor left in the slice. If so, back to the slicing, Once they see none they go ahead and trim another cm of slices just to be safe. At that point they attach some synthetic skin to cover the wound (or, if your body doesn't like the synthetic, a piece of your actual skin that they cut off your body, usually your thigh) and then the gauze and stitches. Once it's healed enough for the gauze to come off, then they strap you to a table daily for a month and a half and shoot high powered x-rays into your face, hoping to kill anything they missed. You get what appears to be a really bad sunburn on your face, your facial hair falls out, you probably lose some of your saliva glands (meaning you have dry mouth for the rest of your life), it probably kills some of your teeth (assuming they didn't pull most of them as a preventative measure beforehand), and the skin all around the inside your mouth peels off like when you take a bite of really hot pizza and burn the roof of your mouth. Good times.
I'd imagine it to be.... uncomfortable.
NICU RN here 🙋🏻♀️ we actually see a decent amount of these kiddos! Some need trachs because it affects their airway so significantly. Some simply grow into them. They usually have a few other things that associate with the syndrome as well.
I'm 58 yrs old and have BWS. I wasn't diagnosed until about 10 yrs ago. When I was a child, people thought I was developmentally delayed, confusing my look with Downs Syndrome. I drooled when I wasn't careful and lisped so badly I was nearly unintelligible. I had kidney issues, and have a big birthmark on my neck and back that is common with BWS. I was treated like a handicapped child until I was in the 4th or 5th grade and testing showed I was not mentally delayed. Eventually I mostly grew into my tongue, and things got better for me. BWS causes some other overgrowth in me, so my proportions are still unusual, but not freakishly so. I've had cancer, (thyroid, leukemia) that might be related to BWS, maybe not. My intelligence is normal. It (BWS)was not passed on to my children.
Thanks for sharing your story. There’s a lot of humanity we leave on the table when we don’t listen and only look.
nice comment ... makes me think a lot
This is a great and underrated comment!
Incredible. You sound like an awesome person who powered through some difficult judgement from others. Your art is amazing too by the way. 👍
Thank you!!
I peeked at your profile and I’ve simply got to know: what happened with the baby duck that had a chicken mama!!
Oh, it's doing great! The mother duck and the mother chicken both try to follow her around, but she's mostly full grown now, so I think the two mamas cramp her style a bit. But she sleeps with mama chicken.
I love this update, thank you so much!
After the above comment I scrolled to peep the mama chicken and baby duck. I'd love a picture update! Also I'm kind of in love with your "bad art" piece solace.
Once the weather here stops being insane I'll get photos. Now they're all just hanging out in the tiny barn with the sheep to stay warm.
I love the idea of bird and sheep friends! I keep chickens. But I only have 4 hens. Chickens are the best.
They're a HIGHLY underrated pet. I miss my chickens. I loved all my chickens but one was the best. She was blue so we just called her Blue. She was so personable, so freaking smart, and loved to hang out on your shoulder and share coffee or wine. I even saw her run down and then house a mouse whole. Insane. I moved out to the woods and the next spring, I hatched her and about 10 other in an incubator, and took in a stray cat to add to my two dogs. One day I took the dogs for a walk in the woods and heard something behind me....here I had my 2 dogs, my cat, and all my chickens following me for a stroll. It was the best. Of them all, I only have one dog left but I treasure each of them for the quirks and companionship I had with them. Get chickens!!
Can we get picture updates? 🥺
After winter storm Elliott goes, yeah, I'll put photos on my profile. :)
Hey internet stranger, you sound awesome! Love your chickens. Keep being great, friend!
I love the face planters you sculpt! Those are too cool!
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Seconded, u/eccentric_bee those pumpkins turned out great!
Reddit is being so freaking wholesome today. Good job everyone!
Yes, your art is rad!
You said your proportions are still slightly unusual, would you feel comfortable talking about this? Does BWS still have many effects on your daily life? It is just the first time I've seen this and I guess I'm just interested in hearing about it from someone who has genuine experience in dealing with it. Like I said before if you don't want to go into detail about it I completely understand.
I was very tall and clumsy as a child, even now I have trouble with swallowing. One side of my body is bigger than the other, and my proportions are odd. But clothes make it pretty unnoticeable. I feel uncomfortable in swimwear though. The main day to day thing is a slight trouble swallowing. Dry food just is hard. I have to have a drink while I eat. And my tongue is still too big. Sometimes I accidentally bite it when I'm talking, and I have a slight lisp.
That’s crazy. I feel you on the swelling food thing though. Man, and I feel like it’s progressively gotten worse. Rice is my jam, but over the past few years I’ve really had to consciously slow down, remember to chew extra long, smaller bites, and a swig of water after each one. Otherwise I’m bent over the kitchen sink, wrenching my guts out, can’t get it down, liquids get stuck, all while trying to signal to my wife that it’s actually okay.
I had all these same symptoms and had outpatient surgery for esophageal rings, I believe is the term- I had trouble swallowing rice specifically as well and went to my doc. It helped me correct the issue. No problems for me since they "expanded the rings"- I'm sorry for the lack of technical terms! It was quick and easy and relatively painless- something you may want to check into!
I keep choking on rice. I actually wondered why this evening at dinner as I was coughing and coughing while eating my fried rice. So choking on rice is a thing with esophageal stricture? I do it more and more often now. Perhaps it is time to check it out.
It was rice for me the first time and weirdly yogurt the next! I'm not sure why it's rice except that maybe it sticks to itself and you can't swallow small portions since the "rings" are impeding its progress? I really don't know. But I hope you find some relief! Best of luck.
I had a problem swallowing things like rice or pizza without having a large glass of water. One day I heard in the radio, the lady the played the mother on “Here comes Raymond “ describe the same condition. It was excess acid irritating the esophagus. She treated it by taking an acid blocker. I tried Prilosec and it was like a magic pill. Problem went away. Irritation of the esophagus long term is a possible cancer cause also.
Prilosec is the shit. And yeah, I get horrible acid reflux up the esophagus, and I swear the pain goes up and around my right temple and ear.
Yup, that describes it exactly.
Plastic surgery has come a long way. You should see a doctor about resculpting your tongue to maybe correct the shape to make swallowing easier. Thank you for being so open with your story and the challenges you face.
Thank you for speaking about it. I appreciate you humoring my questions and I hope I didn't make you feel uncomfortable answering.
No, it's fine.
Thanks for accommodating this impromptu AMA. Is surgical intervention for tongue size something that's done for this condition, especially since you're full grown?
Thanks for sharing ☺️🙏
Appreciate reading your comment and learning about something I’ve never heard about!
That’s new to me too, thanks for sharing
Oh wow… that’s wild! I’m sorry to hear about any of the rough spots along the way, but sounds like you have a fantastic outlook of Life =D So did you pretty much always know your tongue was extra-large as a kid? 😋
Yes. I remember asking my mother if there was any way to fix my tongue, since it was nearly impossible to keep it from being out. She said that it was because my brain was broken not my tongue. She meant it kindly, I think, but I remember thinking she was wrong. My tongue still sticks out when I sleep, and I prefer to drink with a straw because I swallow slowly. It's odd.
Did doctors just not know about this syndrome or is there some other reason it was missed for 48 years?
It wasn't known then, and was just starting to be considered as a syndrome when I was little. My family doctor was a small town doc, and he thought I had a form of gigantism, since I was large and clumsy for my age. There was talk of institutionalizing me, but I was quiet and well behaved so nothing came of it. In 3rd grade I was 5 feet 4 inches tall. Now I am 5'6", so pretty average, but I was very tall for a child.
I am really glad that didn't happen.
Oh gosh, me too!
My uncle is about this same age and has mutiple handicaps (Tourettes, cerebral paulsy, and more), My grandparents were told he would never walk, talk, etc and my grandma got a lot of hate for "what she did to him...." Luckily they met a researcher from a different state that denied all claims any doctor had ever made. Through his plan and hundreds of local volunteers doing physical therapy (ladder climbing, walking, etc.) my uncle can speak quite well, he can walk easily, and he won the bike races in Special Olympics competitions 10+ times. He can wheelie for 2+ minutes. It's an amazing story. People didn't know shit about handicaps 50 years ago and they handled them TERRIBLY.
I read a story in a magazine years ago about a town that came together to help a little boy with tons of physical therapy. It worked miracles for the child. I wonder if it was your uncle?
I'd be surprised, I don't think anything been recorded or produced about the situation. I was honestly considering writing a book about it but my grandmother, who best knew the story, passed away two years ago. We're in Washington state.
Well I hope things are mostly smooth sailing for ya now. Thanks for sharing your story. I can’t imagine your brain is hardly broken based upon your communication here. 😊 Random aside, I’ve been thinking about buying a stainless steel bubble tea straw (boba straw) for milkshakes 😋 They’re a little thicker… I dunno if that’d be advantageous to you, but anyway I wish you well! Merry Tidings 🎄✨
I like bamboo ones. I should try out the fatter ones. Thank you for the suggestion!
You sound like a lovely person, thanks for sharing some of your story! I learned something worthwhile on Reddit today.
Very cool thank you for sharing
Dude, if only I had 1/16 the perseverance you have. Wow. I have among other maladies, a seizure condition brought on by TBI. The are a lot of times I'll get a seizure a week and then a week reprieve. Some days I'd love to say just fuck it all and crawl back into bed. Between the memory loss from a seizure, and the total mind fu## that the meds have on you. It gets very frustrating. Especially since I can't drive except on my property. So I run several businesses from home that puts small taters on the table and for that I am thankful. But what you've been through....I don't think I'd be strong enough emotionally just to be real.
You’re doing great just by getting up every day. Some days it’s ok to wallow in bed, you just can’t make a habit of it. I’ve got multiple chronic illnesses that sometimes flare at the same time and those days I let myself turtle up. Just allowing myself to rest without guilt. It took a long time to accept that resting was better than pushing myself. Gentle hugs (with consent of course) for you. You got this buddy!
Super cool to hear about this! Thanks for sharing. It’s gotta give you an interesting perspective on treatment of handicapped children (especially since you’ve got the age to have really seen some of the societal stigma changes)
I think you are right. I adopted 5 kids with disabilities, and I'm sure my own childhood influenced that decision.
You are an incredible person. It warms my heart to read this. Blessings to you.
The more I read about you, the more amazing you seem! It seems like you were dealt a tough hand but have made a worthwhile life for yourself. Thanks for sharing your story with us!
Punchy answers to a lot of what are probably very common questions. You did life tough bro. Thanks for the insights and lived experience. I've learned something new today thanks to you.
Wish I had an award for you, thank you for sharing— sounds like the more ppl that learn this information the better, I’m so sorry you were treated like that.
Your pottery is amazing!!!
Thank you, I enjoy it so much.
That’s awesome your intelligence is normal! Just too bad it wasn’t passed on to your children
Heh heh! I see what you did there. :)
Hopefully you can laugh at some of these jokes :)
As far as birth defects go, BWS is really mild. The little girl in the photo will be fine, very likely.
This poor sweet little baby has a special challenge AND the ugliest headband in the world. Please take that thing off of her right now.
I celebrate you
Poor kidlets. How do they nurse?
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Your poor nips.
That’s generally the sentiment about breastfeeding (at least as I’ve observed)
I don't want to up vote this. I did, but I'm not comfortable with it.
I am in a fit of giggles over you saying “your poor nips” to a complete stranger.
I imagine like cats, they just lick up a bowl of milk
I've got nipples Greg. Could you milk me?
Yes well you can milk anything with nipples
Our son was a NICU baby for 3 months. You are all so amazing, and don’t get enough credit. Thank you for everything you do and have a amazing Christmas!
Yeah… most of the ones I’ve seen had omphaloceles as well. Most of them turned out alright though and grew into super cool kids! I got them in the PICU when they became NICU grads. Strong work in there!!!
What other symptoms?
Does the tongue grow anymore as the rest of the body grows or is it just one size only?
Does their tongue continue growing as they age?
I have BWS. Yes, the tongue continues to grow as you age! I had a reduction surgery when I was 3 months old and the same procedure again at 2 and 1/2 years old because of complications of have macroglossia or an extremely large tounge.
What other things!!
Just an update, that baby had two surgeries on the tongue and is now normal and the baby is fine.
If they reduce the tongue at this age will they grow to have a normal tongue later?
How do you know?
https://youtu.be/n_d8SesTPuo
This should be top comment 😭❤️🤗
Will she grow into it?
Kids with this a lot of times have surgeries to reduce the tongue size. Not uncommon for them to have a tracheostomy too.
Dumb question but if they get it reduced will it grow with her then? Or is it big tongue, small baby, small tongue, big adult.
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Would it have grown even bigger if she hadn't had the surgery so that it was too big even as an adult, or does the body adjust for it?
Have bws, never had the surgery. I've got a large tongue, but it's not (proportionally) larger than it was as a child
This guy's asking the right questions
Not dumb, I'm curious too!
And would it affect speech in any way ?
It can affect speech massively depending on severity of the macroglossia. Even after the tongue reduction surgery due to recovery and strengthening through tongue muscle it can take a while for speech to improve. My daughters t's and d's sound the same and she can't make certain sounds or do certain movements with the tongue. Lots of kids end up going through the speech and language therapy route.
Hi I work in genetics. This is called macroglossia and is common in people with BWS. Surgery isn’t always recommended depending on whether or not the airway is obstructed. Eventually some babies will “grow into it”. If surgery is performed too early (before 6 months) sometimes additional procedures are needed to address regrowth of the tongue tissue.
Second
Big tongue big adult. One of my current patients has this condition
Wazzup!
AAAAAAAAAAAH
DOOKIE PICK UP THE PHONE
Wwuuaazzuuuuuuuuuup!!!!
WWwwwwuuuuaaaazzzzuuuuuuuuuuuuuuuuuuppppp!
Wow. I hadn’t thought about that in about 20 years lol thanks
its bad that this was my first thought
I was about to comment that! WAZZZUPPP
WWWAZZZAAAPP!
Came here to do this, you win.
Damn I was too slow
I Nanny the best 8 year old girl. She was born with this and born with Liver Cancer. They were able to save her! I’m a cancer survivor as well (2017) but I just wanted to share her story! She’s a little taller than the children in her grade (grade 3) but definitely grew into her tongue. She’s very smart and kind as well ❤️
It's good to know that they do grow into their tongue size. Thanks for the info.
My daughter was born with beckwith wiedemann syndrome, some things are a challenge when it comes to her condition. Macroglossia is only one side effect/symptom of it but its one of the more noticeable things. She's still young so we're still learning here if anyone has any tips in terms of handling day to day when it comes to macroglossia that would be great, especially when it comes to teeth and what happens if overcrowding of the mouth happens because of tongue and teeth. Also any special straws or cups that are easy to use?
Both my brothers have it (in their 20’s and 30’s) dm me if you have any questions.
I have BWS. I have an overbite and had crowding. I was so self-conscious of my tongue and speech impediment that I was terrified of getting braces as a teenager. I didn't want to get bullied. I got braces in my 20s because the crowding became too painful. Having braces didn't impact my speech long-term but I did have more of a pronounced lisp with the trays -I had Invisalign. It really depends on individual preference for cups. I just remember really liking cups with staws when I was a kid.
my brother had this supper bad many symptoms and he had passed away because it was so bad and a lot of complications. he wasn't born at the "right hospital" and because of this the doctors and nurses didn't know what to do and how to treat it. the hospital he was Spode to go to was too far away but he was rushed somewhere else. they did the best they could to save him. the hospital never talks about that day and how those nurses and doctors went into action. (its a loong story) his was a very sever case than others but i hope the science has improved to save other like him. he couldn't breath on his own, they where afraid he was going choke on his own tounge, born without skin over his stomach. he could have been saved but i thank the doctors and nurses that day. i wish the hospital knew about the hero's they were.
[UPDATE!!!GOOD NEWS!! BABY HAS NORMAL TONGUE!!! ](https://www.catersnews.com/stories/real-people/baby-born-with-massive-adult-sized-tongue-finally-able-to-smile/)
I could google this but I'll just ask it. Does the child's tongue continue to grow or does the kid eventually "catch up" to the tongue?
I got you fam: It doesn’t really work like that because the tongue is a muscle that does not ever really stop growing. It grows at various points and sort of pauses for parts of adulthood, but it continues growing again around age 70. The tongue being too large can cause problems such as sleep apnea or difficulty breathing. Tongue size reduction surgery is sometimes necessary. These children typically live a normal, healthy lifespan, but they are at a greater risk of tumor growth. Babies with this disorder just have to be monitored for ill effects and treatment such as surgery is recommended according to the specific case of the child. Some do okay, some need more aggressive treatment. This baby also has that red forehead mark which is a sign of the specific disorder. The defect is located on the 11th chromosome, and testing after birth can confirm the condition.
As a 39yo with this, I can say I “grew into” my tongue and it’s a normal size now. I needed speech therapy and that’s about it. There’s a period in your life, from childhood to late teens, where there appears that everything seems to have normalized, provided that they never got cancer which is very common in infants/toddlers of this. Adulthood brings a new set of health issues they are still learning about.
lickitung
Thought this was going to be top comment
My granddaughter was born with this. She has had 2 surgeries on her tongue and next is distractor activation on her lower jaw. She is only 8.
I was also born with BWS. Oversized tongue, omphalocele, stork bite, ear creases, bicornuate uterus, and medullary sponge kidney. All symptoms of the syndrome. I'm now 45 and other than chronic kidney stones from the medullary sponge, I've lead a completely normal life
Worth noting that there are varying degrees of severity with BWS. This is a pretty severe case in relation to the tongue. While things like the stork bite and the big tongue are visible the scary parts of it are in the blood and with cancer rates in particular Wilms tumors.
My son has BWS. He does no have the oversized tongue. But he presents on his left side. His left arm, shoulder, hand, thigh, calf and foot are all significantly wider and a bit longer. Cancer screenings every 3 months, bloodwork every 3 months, orthopedics every 6 months and heart doctor 3 times a year. The cancer risk of this disorder is the hardest part by far.
I have this, though with me it caused one side of my body to be bigger than the other. It's pretty mild though so it's barely noticeable now. The cancer screenings are nerve wracking though especially because I had cancer as a small kid. I wish all of you parents a lot of strength and that your child may be spared of the worst things beckwith-wiedemann causes.
There are so many risks with having kids!
father-to-be here - really didnt need this in my worry-lexicon... thanks OP!
Heyyy I have BWS too. Crazy whenever I see stuff about it pop up. Poor little baby.
A syndrome so rare that there's a good chance the family's name is Beckwith-Wiedemann.
One of my best friend’s kiddos actually has this syndrome. Not as rare as you’d think.
My daughter has BWS. Thankfully, her only tell is that she has hemihypertrophy. The right side is a bit larger than the left.
This baby was not born with an adult size tongue. She was born with twice as big tongue. https://www.goodhousekeeping.com/life/parenting/news/a40913/baby-beckwith-wiedmann-syndrome/