Our BWS journey so far

Our daughter was diagnosed with BWS at birth. My anti natal scans were showing that I was having a very large baby and I was told there was a possibility of BWS the day before she was born. I was booked in for a C-section the following day, and we went home and researched the condition.

She was born on 21th August 2008 (just over 2 weeks early). She weighed 11lb! We knew straight away that she had BWS as she had a very large tongue. She also had severe hypoglycemia. She was admitted to SCBU, and we spent the next 6 weeks trying to stabilise her blood sugars. She was then transferred to GOSH, and at 11 weeks, she had a pancreatectomy (70% of her pancreas removed). Finally her sugars stabilised enough and we bought her home on 21st November 2008. Although she had a very large tongue, she managed to feed from a bottle. It was hard work as she was on 2 hourly feeds with each one taking almost an hour!

For the next 3 months we struggled to maintain her sugars. The medication (diazoxide) that she was on was increased quite a few times, and for a while she had a supplement in her milk to help. At 6 months old, she was admitted to GOSH under the ENT department and had a tongue reduction. The recovery was hard, but after 3 or 4 weeks of recovery, the difference in her was amazing. She managed to feed quicker which really helped with her blood sugars.

Even though she had been through so much, she was still making her milestones - She was walking by her first birthday!

When she was 18 months, it became apparent that her right side was larger than her left. She was starting to limp, and we struggled to find shoes for her incredibly wide feet. She was assessed at GOSH and she had a 1cm leg length difference. She was given shoes with a small lift in which really helped with her walking.

On 21st July 2010 (My mums birthday!), she had a second tongue reduction by Mr Dunaway. This made a HUGE difference to her feeding and speech! Although after the surgery, we started to have problems with her breathing at night, and after a sleep study she was diagnosed with severe obstructive sleep apnea. After having her tonsils and adenoids out in November 2011, her breathing seems to have improved.

In July 2012, She had another debulking of her tongue and had her glands removed from under her tongue. Again this was done at GOSH and has had further remarkable results. She can now close her mouth very well!

Throughout all of her problems, she has developed into a very happy, intelligent four year old. Her speech is incredible considering how large her tongue was in the first place. She has just started school and is enjoying every minute!

1 Reply

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  • Hi, welcome to the community and thanks so much for posting. What a journey you've had. Be encouraged that usually after difficulties in the early years most children settle down and things proceed much more smoothly as they get older. So glad she is settled in school and enjoying it. Make sure you make some time for yourself now!

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