Christopher with HRHS, VSD and TGA

Christopher with Hypoplastic Right Heart Syndrome (HRHS), Ventricular Septal Defect (VSD) and Transposition of the Great Arteries (TGA)

This personal story is written by Rachel Clynch, Christopher’s mother.

HI! My name is Rachel and I have 3 children, my oldest is Christopher who is now 8 years old and has HRHS (Hypoplastic Right Heart Syndrome), VSD (Ventrical Septal Defect) and TGA (Transposition of the Great Arteries).

I was 2 days from being 20 years of age, when I had christopher. He was 2 weeks late so I had to be induced. I got to the ward for 8 am with no idea of what lay ahead of us, as far as Myself and hubby, Carl baby Christopher did NOT have any health problems.

At 9.30 pm that night Christopher was born and all seemed fine bar him not feeding well through the night because he was my first I didn’t think anything of it! However, the next day we were informed that a doctor would come and see Christopher, and then we could go home - I just couldn’t wait to get my little boy home.

The Doctor came and he did all the checks but I wasn’t taking much notice, I was just thinking about getting home and this was when everything changed, the Doctor told us “they need to do some more checks on Christopher” . Christopher was sent to SCBU from then I don’t remember much more until we were on our way to Alder Hay. We had to take a taxi because we were not allowed to go in the ambulance, this is where I went into denial. I was thinking it will all be ok and we would still be home later that day (little did I know what would happen).

We arrived at the ward to find that the nurses were doing heart scans of Christopher, it seemed to take forever, but I know it wasn’t that long after that the Consultant told us that Christopher had a major heart defect. I just burst into tears my whole world half fell apart at that moment because in my eyes 1 open-heart operation would be fine when infact it was 3 stages of open-heart surger and several cardiac catheters. I rang my dad and Carl rang his family without them I dont think we could have go through the early days.

  • At 1 week old Christopher had his 1 open heart surgery and 6 weeks later we were home.
  • On his 1st birthday Christopher had his 2nd stage operation.
  • At 2 and half years old he had his 3rd stage operation.
  • Christopher has had several catheters inbetween but he is such a brave and happy boy and he is on warferen and enapril for life but he IS still here.

Last year (2008), Christopher had a cardiac catheter and we were worried he might find it upsetting so he had some counselling which really helped him in knowing what and why he was having the operation. He made a book and told all his classmates all about it.

Before I had Christopher I didn’t know of congenital heart defects and since having Christopher I have learnt a lot, although it seems so long since the day we got told my little baby was ill but to look at him now you wouldn’t know there was a thing wrong with him. Some days he has more energy than me and he looks after his little sister as well as having us all laughing. I am so proud of him.

Christopher and his sister

Written by Rachel Clynch