Hugo's story

Told by his mother Julia

Hugo was born in 2012 in poor condition with intrauterine growth restriction  (IUGR) and antenatally diagnosed Transposition of the Great Arteries. The first 24 hours were very stormy, he was stabilised after an urgent balloon septostomy at four hours old and went on to have a switch at ten days. Unfortunately Hugo suffered multiple complications during surgery and post-operatively and we are very lucky he is still here. Hugo finally got sent home after eight weeks, but needed further open surgery at five months for hypoplastic pulmonary arteries and then at nine months had a PEG feeding tube fitted as all his problems in early months meant he never really developed an association between hunger and food and would only take half an ounce at a time and was very small as a result.

The last few years have been a long journey of weaning him slowly off his PEG by the time he was two and supporting him through multiple episodes of pneumonia and severe viral wheeze . This has been hard for all of us and juggling his needs with those of his two sisters and busy jobs has been tough! Despite a very difficult first four years he is now, however, doing brilliantly and loving life, school, football and doing all the things boys his age do. He’s on the small size and on Lisinopril but otherwise you wouldn’t really know. He is currently waiting for a date for a mitral valve repair or replacement due to severe regurgitation.

Hugo doesn’t remember his early surgery so what lies ahead will be a different challenge for us all to those we’ve faced before. I felt to mark the challenges ahead for him I wanted to set my own challenge so on 1st September I took to the chilly waters of Llanberis and swam 5 km for CHF.

CHF has been a great source of information and support for us and the research they do is vital in improving outcomes and the experience of care for CHD kids and their families .