{ Starting Out }

When we found out that Olivia had BWS it was like being plunged deep into the unknown. Our health professionals appeared to know very little about the syndrome and it was clear from very early on that we would need to do lots of our own research in order to be the best advocates for our little one.

Most healthcare professionals that we met at our local hospital had never come across a case of BWS before. We learned most of what we know now through trawling the internet and the support of BWS websites and parents that have been on this journey before us. Luckily Olivia is now under the care of Great Ormond Street Hospital (GOSH), and whilst we would rather she was home with us, we know that she is now at the best children's hospital in the UK and is receiving excellent treatment.

One of the first things we learned when researching BWS is that, whilst there are classical symptoms, the syndrome can show itself very differently between children. Olivia was of large birth-weight and had the typical macroglossia (large tongue). From birth her blood sugar levels struggled to stay stable and she was treated for hyperinsulinism. Olivia struggled to feed from a bottle or from the breast and so has been fed almost solely by her NG tube.
At the age of 4 months Olivia started having marked breathing difficulties. GOSH had intended to perform a sleep-study, however before this could be carried out they realised that instead she needed an emergency tracheoctomy. Since the tracheoctomy, Livvy has also been on CPAP.

Our next big goal is to get Olivia through her tongue reduction surgery, scheduled to be carried out later this week, Livvy will have just turned 6 months on surgery day!

We hope that by writing this blog we will continue to meet new friends, and possibly even help some parents that are about to start a similar journey.