Help for Rino

01/07/10

Hi,

My name is Emma and I have a small school on the island of Koh Samui in Thailand.  One of my students, a little boy called Rino, has just been (after literally years of doctors telling his family he would grow out of it) diagnosed with Ebsteins.  He saw a specialist in Bangkok who told him he will need surgery within a year.  His parents don’t have any insurance and the operation will cost somewhere in the region of 2 million baht, or 40,000 pounds.  We are setting up a website for him and are starting to organize fund raising events.  The reason I am putting this post up here is to ask for ideas and help.  He is an amazing little boy and I have come to love him very much over the last five years that I have known him.  He hasn’t had the easiest of lives and it breaks my heart to have to see him now go through this as well.  Any ideas will be gratefully received and when we have his blog set up I’ll post details of that too.

Thank you, Emma

 

I am a first time Mum, and we were told our baby girl had Ebsteins the day before she was born.  Although we actually had had an abnormal NT at 12 weeks, and went ahead with an amnio which was normal.  We proceeded with a detailed u/s and echo at 20 weeks and were told that our baby was completely healthy.  We were soo relieved!!  It wasn’t until I went overdue and had a routine  u/s to check the fluid was it noticed that she had a heart defect.  We were devastated, and shocked wondering how it could have been missed.  Once it was diagnosed, I was induced so that she wouldn’t be born over the weekend, to maximize the resources available for her.  After a very quick labour, Sydney was born screaming away.  She needed no immediate interventions, and I got to cuddle her before the nursery team took her to the PICU for observation.  She spent a few days in the PICU, and needed no intervention besides oxygen as a pulmonary vasodilator.  We then spent a few days on the cardiology ward in the children’s hospital before being discharged home.  She as acted like a regular healthy baby!!!  She is now two months old and doing great.  She weighed 7 lbs when she was born, and has since doubled her birthweight.  I hope and pray that she stays healthy (and happy!) her whole life, and that more research is done regarding Ebsteins Anomaly.

Thanks to all those who were involved in our pram push in the park.  We raised over £1300 which was great!

See http://www.thisisbath.co.uk/news/Mum-bids-raise-funding-training/article-2415655-detail/article.html for the write up.