BWS Support
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macroglossia

Hi I’m 33 weeks pregnant and I thought all my pregency that my baby was healthy and I’ve recently moved to London from Bristol so I had to get my notes transferred I then had to go for a normal scan and the sonographer noticed that the babies tongue was sticking out a lot and a little bigger than it should be I done the following week went for another scan and they said that the babies tongue sticking out a lot and is showing signs that you might have macroglossia nobody in my family has this condition nor have I ever heard of it . I am quite frightened I don’t know what to expect will the baby be able to breath when she is born it is something quite frightened out if anybody has gone through the same experience I have gone through it before can you please help

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He Denise. I'm also from Bristol! My son is almost 2 and a half and has BWS. We didn't find out until a couple of months after he was born but he also had a large tongue. This wasn't picked up on any scans and no-one mentioned BWS to us. We found out from Dr Google after looking up "large tongue" and saw he had many of the other features of BWS too. You're lucky it has been picked up so early as many health care professionals aren't familiar with the condition as it is quite rare. It's all quite daunting at first but take a deep breath - everything will be ok! If your little girl does have BWS, it's really not that bad. I remember being told that of all the syndromes to get, BWS is the best one as the kids almost grow out of it. Kids with this condition live a normal and healthy life. My son is bright, funny and very cheeky and keeps up well with his 3 brothers!! He doesn't have any issues and leads a perfectly normal life, in fact you wouldn't even know he has it! The main things to be aware of if it is BWS is to get your little one's blood sugars monitored straight after birth as they can suffer from hypoglycemia. You will also need to follow the screening protocol (3 monthly ultrasounds and blood tests to check afp levels) this is due to the increased risk of tumours. All sounds scary I know but it really isn't all that bad and if there are any problems, it will be picked up early for treatment. As for the large tongue, did they say how large it was? In most cases, it is only mildly enlarged and breathing isn't a problem. If it is severely enlarged, there are options to help with breathing, but these will be discussed with you. Most babies manage just fine with breathing and feeding. You also have the option a little later of tongue reduction surgery. My son had this and it was straight forward and recovery was quick. There's a specialist centre for BWS at Great Ormond Street which would be handy for you if living in London. We also have a specialist here in Bristol at the Childrens hospital where my son goes and he also had his tongue surgery there. There's a great Facebook group which you may find helpful, all the people are lovely and have lots of great advice and are very supportive. There are also adults in the group who have BWS. Feel free to contact me if you want to chat or have any questions, my email address is sarahmorgan2007@yahoo.co.uk.. xxx

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Hello Sarah, I just read your response here and got curious about your son’s age and at what age did he go through surgery? My daughter is 8 months now and sometimes the tongue is just fine - sometimes she will stick it out of her mouth an entire week. How do you feel about the surgery after having gone through it?

Thank you!!

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Hi. He had just turned one when he had his tongue surgery. To be honest, it was the best decision we made! He was considered borderline for surgery and would hold his tongue out some of the time but not always. For us, it was more about the affect it was having on his lower jaw. I hear people say "They will grow into it" but unfortunately this is usually to the detriment of the lower jaw as they will develop an underbite as the tongue pushes the jaw forward in order to accommodate it. My son had already started to develop an underbite (This has now corrected following surgery) It is much easier to have the tongue surgery than it is to have jaw surgery in later life. We found the surgery very straight forward and recovery was quick, with him eating soft food the following day. It was also only an overnight stay in hospital. He had the "W cut" type of surgery which, from what I understand (and was certainly the case for my son), is less invasive, has fewer risks, has little affect on taste/sensation and recovery is very quick. (I know the keyhole and other types surgery are more invasive and the kids stay sedated for a few days and stay in hospital a lot longer. I'm not sure why they do this type if the W cut is more straight forward and has the same outcome!) Yes he was uncomfortable for a day or 2 but he won't remember anything about it. His tongue is still thicker and wider than "normal" but I believe no tongue reduction will alter this. Feel free to email me if you want to chat more (sarahmorgan2007@yahoo.co.uk)

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Hi I appreciate both replies what I am very concerned about is the first gasp of air the baby gets does having a larger tongue Make it harder for her to breath I have been offered a caesarian For different reasons as my last son was caesarean .. I just don’t no what to do as there’s a lot of water around her and I’m thinking myself it’s because she can’t swallow very well has anyone been told this

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Hi Denise. Polyhydramnios (Excess amniotic fluid) is very common in BWS babies and is also seen as a marker for the condition. My BWS son was born by C-section too (my first was breach so I had a c-section and my 2 other children were born naturally but with complications which is why I had c-section with my last (BWS) baby - my 3 other sons do not have BWS) I wouldn't worry too much about the large tongue affecting breathing, there are some children who have massively overgrown tongues that manage just fine breathing. If you do opt for a c-section (and you may considering your last was born this way and especially if your baby is big!) you will have plenty of medical staff on hand if there are any problems. I know there's a lot to take in at the moment, but try and relax and enjoy your pregnancy, our kids are extremely resilient and strong! Good luck with everything xx

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I was thinking there wasn’t something quite right when they told me that her tongue was a bit larger and then said there is too much water it was starting to add up then I’ve never heard of this condition until last week thank you to everyone have replying it’s a lot to take in and I think the not knowing is worrying until she arrives in two weeks maybe abut more ..

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I was also wondering babies with bws are they kept in hospital long after birth and how were they feed threw bottle or tube

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My boys both were born with bws .. my youngest was picked up on scan as bowel and liver was outside his tummy...both were tube fed for 9months I think ..but you will be trained to do this..and be fully confident before you's leave hospital...

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My daughter was born may 3rd thank god her toung is a bit bigger than normal and yes she does stick it out a lot but she’s perfect and healthy all the stress in the last 10 weeks of my pregnancy was so hard

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Denise

Your message just popped up in my inbox so I hope by now that your daughter has ben born and that everything is fine. You will also be able to assess how enlarged the tongue is as this does vary from child to child. As other people have said, if there is any question of tongue reduction surgery the macroglossia team at Great Ormond Street is excellent though this service is only for Beckwith Wiedemann children. If your daughter does have BWS a genetic test is very important to let you know which subgroup she is in. If we can help please contact us either by email or phone (01258 817573) and we will do our best.

Best wishes

Bob Baker

BWS Support Group UK

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I am so glad I found this forum as it raised my hopes up for our little daughter born 4 weeks ago most probably with BWS. We are still waiting for the genetic test results but the geneticist we brought her to was already 95% sure it was BWS. I am from Eastern Europe and the only info on BWS I could find on google was a scary wickipedia article and a few medical texts back from Beckwith's first research papers.

Our daughter has macroglossia, yet she doesn't have issues breathing and feeding. Should I expect this to get worse in time? Does it make sense to travel to London and make an appointment at GOSH? I spent 4 sleepless weeks making my own research over the internet and I must confessed, the unknown terrifies me.

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Dear Axentrix. I am from Hungary. My son, who is 9 weeks old now, was born with macroglossia. I do not know where to turn to, here they do not have any precedent case. My boy can not even close his little mouth, it is constantly open. Can you please share your experiences, as I see you are from eastern Europe? Thank you

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