Hugo was diagnosed with transposition of the great arteries and ventricle septal defect while his mum, Toni, was pregnant.

When Hugo was born, surgery was scheduled for when he was 8 days old. Toni says:

The day of surgery was the longest day of our lives.  Even though the surgery itself was a success, later that night the surgeon had to come back and open up Hugo’s chest as his heart was beating too fast.

Hugo remained on intensive care during that time for a week.

Hugo was able to go home for the first time a few weeks later. Toni describes the journey they have taken as a family:

Finding out that Hugo had congenital heart disease (CHD) was heartbreaking. He is our first child and instead of being able to enjoy my pregnancy I spent the second half of it worrying about his surgery and his prognosis thereafter!

But the staff at Leeds were amazing and they really tried to put our minds at rest throughout the pregnancy.

I did not know anything about CHD before this and have now learnt so much and I am in awe of all the parents and children that go through this journey.

During their time at LGI, Children’s Heart Surgery Fund provided accommodation for the family so they could be near Hugo. Toni adds:

Me and my husband were given accommodation for the whole 3 weeks that we were in Leeds following Hugo’s birth and I will be forever grateful for that.

We do not live near Leeds and to have had to leave Hugo in the hospital and return home would have broken my heart.

We took a lot of photos of Hugo during that time in hospital so that we can tell him all about it when he is older.

Hugo continues to do well at home and the family are hopeful he will not require further surgery.