Cordelia Griffin was born with Transposition of the Great Arteries (TGA) and had successful surgery, she is now a lively toddler.
This is the story so far….
I was five days overdue when my waters broke and Cordelia made her grand entrance into the world-by emergency c-section at Margate Hospital Kent. She weighed a healthy 7lbs 1oz.
She was looking a little blue and grunting, so the nurse said they would put her in the special care baby unit for a couple of hours then bring her back to me. I was so exhausted I wasn’t too concerned and thought I’d take the opportunity to get some rest.
A few hours later around 11pm a nurse told us they wanted to keep our baby in SCBU for the rest of the night. Luke went home to sleep.
At half past two Luke was woken by a call from the hospital asking him to get back there. Once he arrived he was told that there was a problem with Cordelia and they wanted to tell us both what it was together.
They said “that her oxygen levels were at 62%” and they wanted to transfer her to a London hospital. We were dazed and confused as she was put into an ambulance and taken 100 miles away to the Royal Brompton Hospital.
Our whole world had just fallen apart. We had no idea what was happening. No-one in Margate could tell us what was wrong with our precious daughter, and I was not fit enough to travel with her. We received a call from Jennifer at the Brompton and we were told she had a condition called Transposition of the Great Arteries. They needed permission to do a procedure called a balloon septostomy immediately, then she would need an operation.
Three days later we were reunited as a family, all be it in a hospital, Cordelia in the Paediatric Intensive Care Unit (PICU) on the fourth floor and us in parent accommodation on the sixth, but at least we could hold her at last.
She had a line in her groin feeding her a drug called prostin which helped keep the oxygenated blood flowing round her tiny body. She was too tired to take feeds so we poured milk down a nasal gastric tube.
We were living in a bad dream. A nuclear holocaust could have occurred outside, but we wouldn’t have known or really cared. Our daughter needed open heart surgery to survive.
The surgeon Massimo put it simply “life is not conducive without this operation”. The risks were immaterial. No surgery=no life.
I found it too difficult to talk to any friends or family, so sent out text message updates. The responses of support were comforting.
At ten days old we went with her in her cot to the theatre, stayed while she was sedated and then waited and waited and waited. What do you do when your child’s life is in the hands of other people and you know they are cutting her open?
Seven hours passed, it felt more like seven weeks. That was the estimate I’d been given.
Why hadn’t they phoned?
We couldn’t sit in our room any longer. Another half an hour and she was out of theatre and being brought back to PICU.
It had been nearly eight hours since we’d seen her. Two and a half hours of that time she had been on a bypass machine.
She was on a ventilator and now had a line in her neck as well as her groin. Seven different drugs were being pumped into her body. The surgery had apparently gone well though.
Luke couldn’t bear to see her like that, but it wasn’t long before the ventilator was out and she started to look like a baby again.
Her recovery was astonishing and just over a week later we brought her home. She had lost nearly a seventh of her body weight and looked very scrawny, but we were home. We had to give her two diuretics and an antibiotic for another week and then we were completely “normal”.
She suffered what we think were night terrors sometimes, although our cardiac liaison nurse had never heard of a baby experiencing them before. She would cry out in her sleep & seem agitated.
We go back to the Brompton to see Dr Rigby for check ups every year. At the last one he was extremely pleased with Cordelia and said “it was unlikely she would need any more surgery.”
We thought we were the unluckiest couple when we first found out about Cordelia’s condition. We were devastated but we soon found out we were actually pretty lucky. Hers was a “simple switch”, just a matter of putting the arteries the right way round, bearing in mind a baby’s heart is around the size of a walnut! And the problem had been spotted straight away.
DeeDee (as she named herself) is now a cheeky three year old (as of Feb 2009) with no outward signs of the traumas experienced. Obviously there is a scar down her chest and marks where the lines and drains & needles were (if you look close enough). She plays with friends and has more energy than the two of us put together! I think she’s bionic!
We try not to treat her any differently, but obviously there are concerns if she hurts herself or is ill.
Are we overprotective?
Last year Cordelia was the face of the British Heart Foundation Help-a-Heart campaign, appearing on posters TV and national newspapers, highlighting that the BHF funds research into CHD as well as other coronary diseases.
Having a baby in hospital is the worst thing that can happen to any parent. I hope that anyone that reads this can take comfort in knowing that they are not alone, many of us have been there and got through it. It’s a tough experience that I wouldn’t wish on anyone, but it has made us stronger and we don’t worry about small things any more.
Notice the difference between the two scars, on the left the scar is red and covered in iodine (not long after the operation) and on the right, the scar has now faded
Written by MaddieIf you would like to contact Maddie, you can email her on email@example.comCHD-UK has been given permission by Maddie to use the photographs.