Cordelia with Transposition of the Great Arteries

For all the babies, children, teenagers and adults born with Transposition of the Great Arteries

I’m mum to one of the most lively energetic four year old you could ever meet. People are astounded when I tell them she underwent seven and a half hours open heart surgery at just 10 days old.

My pregnancy was fine, ultrasounds showed a healthy baby with a good strong heartbeat. Five days after “due date” my waters broke and the rollercoaster ride began. After nearly eighteen hours of difficult labour & baby starting to show distress I was given an emergency c-section.

In hindsight I think this may of helped save my daughters life, as she was delivered blue & grunting. One brief look at her and off she went to SCBU (special care baby unit) to be “warmed up”.

I could get some rest before I got my newborn. Life was good, so I thought.

A few hours later and we were told that her blood oxygen sats were 60%. Duh? Is that bad I naively ask? Yes they say, she’s going to be transferred to a specialist hospital we’re just waiting for the ambulance.

I can’t travel with her as I’m still on a drip etc. from the c-section. Her Daddy makes the difficult decision to stay with me & take me to her as soon as I’m able.

Soon after she arrives at the Royal Brompton (over 100 miles away) they call to say she has Transposition of the Great Arteries (TGA) and they need permission to do a procedure called a balloon septostomy after which she will need surgery on her heart.

My world fell apart. All the expectation of having a new baby to take home & care for, gone. Nobody in the maternity unit could tell me anything about her condition, not even the paediatrician they got to come and see us.

We moved into the hospital parent accommodation - what a godsend! Our days were spent between our bedroom on floor 6 & PICU on floor 4.

It was a whole world I never knew existed. So many poorly babies & franticly worried parents.

Getting me to sign the surgery consent her surgeon put it very simply - “life is not conducive without this operation”. Without it she would die. No choice then.

Because she was to weak to feed naturally milk was poured down a NG (nasal gastric) tube straight into her tummy.

Ten days after she was born my baby had her chest opened and her tiny heart cut & stitched.

A baby’s heart is about the size of a walnut - hard to imagine operating on something that small.

Nearly eight hours after we kissed her goodbye outside theatre and I melted into a sobbing wreck she came back to PICU.

Her chest was splinted open, she was on a ventilator there was an IV line in her neck & one in her groin. She had three chest drain tubes. Her Daddy couldn’t bear to look at her, I just wanted to scoop her up & hold her.

Her recovery was remarkable. Children heal so much faster as they’re growing anyway. Seventeen days later we brought her home.

Since then there have been check ups, but so far everything has healed well & her consultant is really pleased. I’ve learnt so much about CHD (congenital heart disease).

Cordelia started nursery class at primary school last September and loves it. Her teacher tells me it’s difficult to keep up with her she has so much energy!

I will be eternally grateful to all the people that gave my daughter a future; blood donors, nurses, doctors, researchers without them my life wouldn’t exist.

Written by Maddie Revell

1st February 2010

Click here to read Cordelia’s story from the beginning

CHD-UK has been given permission to use photographs of Cordelia by Maddie Revell.