BWS Support
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First time with bws

First time with bws

My daughter was 2 months early and spent a month in the nicu , we found she has bws enlarged tongue , he also failed her hearing test , they say she will grow into it, I don't know if I should get a second opinion or just wait it out. She is almost 2 months old now . Here is picture of her. Plz let me know what you think

10 Replies
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Hi Angela!

Just wanted to say that your daughter is so cute! She very much resembles our son as a newborn (who is now six months old) regarding the tongue. He was diagnosed a few weeks after birth and is doing just fine. He's a sparkling little boy, strong and happy, learnt to crawl a month ago and is now standing up. We've seen lots of specialists to cover every symptom, and so far absolutely nothing has to be done except the screening every three months. The tongue has never been an issue, no problems breathing, feeding, babbling etc. I hope you will be doing as fine. And of course it feels better to have a second opinion, this condition has to be taken seriously. We met a geneticist who could confirm it. Best of luck! Regards from Stockholm, Sweden :)

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Thank you, I was just wondering if she will grow into the tongue the doctor said she will.

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Hello, we took our son to a cranial facial Doctor that specialized in BWS. Dr Marsh retired but he left another trained doctor at Missouri Children's hospital in the US.

A specialist will let you know if baby needs surgery or to wait. Enjoy the baby! They grow too fast and any questions, let me know.

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Do you know how I can contact him or anyone near where I live?

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Hi, you can contact Kristen.burr@mch.com

The doctor trained by DR. Marsh is Dr. Chad Perlyn and he seems to be in Miami, Florida in the US. Any other question, let me know

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Hi there is a support group that is "closed" on fb if you want to join it. My daughter has BWS and is 16 months now. She had TR by Dr. Marsh in Missouri a few months back over Spring Break. He has retired but I heard Dr. Gage took his place and is excellent too. Go see a genetic doctor and start the ultrasounds and afp blood draws asap.

Let me know if I can help you out!

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How can I contact these people

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Is it up to me if I want my daughter to have a tongue done or is it the Doctor choose? Please someone help me

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Her tongue looks quite mild...just like my sons did 😃 he grew into it by a year old. It may be a good idea to just wait and see if she grows into it before going for surgery as it is a hard surgery for a little one. Ps she is adorable!!

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Hi,

This group is excellent. Contact them

facebook.com/groups/7835762...

They helped me a lot!

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