Cerys’s Journey

fbce4b24-17a5-4112-a9f1-3ff5b47e9cc3 98d17426-01d4-4d5a-a1f5-febc407c8781Thank you for taking the time to visit our website for Great Ormond Street Hospital Charity, Iceland Trek 2015.

For people that do not know Cerys’s story, she was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) when I was 20 weeks pregnant. HLHS is a rare problem that occurs in approximately 1 in 5,000 babies and accounts for 1% of all congenital heart disorders. Without surgery Cerys wouldn’t have survived more than a few days.

I attended our 20 week scan; I assumed, as I suppose we all do, that it would be routine and in half an hour I’d be on my way to the office for the afternoon.

The first 15 minutes or so followed a familiar pattern, “there’s an arm, there’s the head, there’s a foot”, etc. The sonographer suddenly went quiet and asked us to be quiet while she concentrated. This made us feel somewhat uneasy and a sense that something wasn’t quite as it should be. After what felt like an age she told us she needed a second opinion. She left the room and returned with a consultant. Following several minutes of muttering he declared that there appeared to be “a serious problem with your baby’s heart!”  That certainly wasn’t in the plan for the day! We were treated at Great Ormond Street Hospital within 24 hours.

2012-06-08-18.58.55HLHS means Cerys was born with half a working heart. At three days old she had her first open heart surgery and then another at seven weeks old. She spent the first three months of her life at GOSH.

Cerys was due her third planned surgery in July 2012, but she was becoming more unwell and started to go into heart failure so emergency surgery was brought forward to May. GOSH ended up doing this stage on her ‘third’ birthday! Her treatment was carried out in a part of the wonderful “New Development” that continues to require funding.

The name Cerys means “to love”. She enjoys her life with “great zest” and is always “fun” to be around. She has changed all our lives for the better . . . . and is my complete inspiration.

For the first time in 5 1/2 years we are living what feels like a “normal” life with Cerys. Our recent outpatients appointment, on Friday 9th Jan 2015, at GOSH gave us the all clear for six months which meant more than any words could convey to you now. There are no surgeries planned or to worry about for the first time in her life however Cerys remains under the constant and ongoing care of GOSH, with her next cardiac appointment being the 10th July, the day before we leave for the trek.

So now to the next challenge! – Julie and I wanted to take part in this trek to say thank you to all at GOSH that have and continue to look after her.