Transposition of the Great Arteries: Elsie’s story

Elsie’s heart defect, Transposition of the Great Arteries, wasn’t detected until she was critically ill. A month after her birth, Elsie’s mum, Becky, was admitted to hospital for post birth complications. Had this not occurred, Elsie may not be here today. Here, her dad Damian tells their emotional story:

After nearly four years of trying for a baby we finally had our first 12 week scan and were told everything looked healthy. Our 20 week scan went fine, although the sonographer couldn’t see our baby’s heart due to the position she was lying in. We came back for another scan of our baby’s heart – and again we were told everything looked perfectly normal. Our pregnancy went smoothly.

My wife, Becky, was induced 12 days after her due date – and just two hours later our beautiful baby girl, Elsie, was born. Her feet looked slightly blue but, after being warmed with a towel, the colour improved slightly. After one night’s stay in hospital we were discharged, thinking we were taking away a beautiful healthy daughter. We couldn’t have been happier. 

Our first month and Christmas together was more than we could of ever wished for – Elsie seemed a very content baby who slept a lot and hardly every cried. We saw the midwife on five occasions due to my wife having pains following the birth, each time we asked about the blue colour of Elsie’s hands and feet, and were told it was perfectly normal.

Then my wife started having severe stomach pain and we ended up in hospital on the delivery ward, for her to be checked over. 

While I was changing our beautiful daughter’s nappy a midwife noticed the colour of her hands and feet. She questioned us and we just told her they had always been like that and we had been told it was normal – but she contacted the paediatrician to come and take a look.

As soon as the doctor listened to our daughter’s heart my wife knew something wasn’t right. They told us our baby was in great danger, and took her to the special care baby unit.

My world came crashing down around me when I was told she had a congenital heart condition called TGA  – where the main arteries to her heart were the wrong way round and her body was only getting oxygen through the hole she had in her heart. She had other heart defects too. I then had to go with the consultant and break the news to my wife, who was still hooked up to the drip and unable to see our baby.

If a oxygen pulse oximeter was available in the maternity ward and had been used on our baby girl her heart condition could have been picked up before we left the hospital and our whole journey would have been less traumatic.

We where told she would need a children’s air ambulance to take her to Bristol Children’s Hospital to preform open heart surgery. With her stats dropping dangerously low, she needed to be sedated and ventilated to be able to fly her safely. 

I would have to fly with our daughter as my wife was still poorly and had to stay in hospital, which broke her heart, not being by Elsie’s side.

Once we where loaded onto the helicopter the pilot was being told by the air traffic control it was to late to fly and the helipad in Bristol would be closed. He persisted, saying that if he didn’t take off our baby girl could die and he had to fly. The helipad in Bristol agreed they would stay open and in a short 22 minute helicopter ride we were in Bristol. 

Elsie was rushed into theatre for a balloon septostomy to make the hole in her heart larger to allow more oxygen to flow round the body. I felt like I was in a living nightmare. I was allowed to see her and she lay sedated with wires everywhere, she no longer looked like our little girl.

Her surgeon told me she had survived longer than most would with this condition and how lucky she was to be alive. We were very lucky my wife was poorly at the time, otherwise our daughter would not have survived much longer. 

I signed the consent form for her open heart surgery, and even though I knew the only other option was death, it was still heartbreaking. All this time I was keeping my wife up to date but I just needed her to be here – eventually she she was able to be transferred by ambulance and Elsie was finally reunited with her mummy.

We spent a few hours with our baby before her operation, the nurses let us hold our beautiful girl even though she was attached to all the monitors and wires, a ventilator, cannulas in both hands and lines in her neck and groin. She was wheeled down to surgery and my wife and I where left in tears, knowing our daughter was going through such a major operation on her tiny heart which was only the size of a walnut. 

We where told the operation could take anywhere from five to nine hours and she would likely come back with her chest open and may be on a bypass machine.

When the surgeon came looking for us, it was the most nerve racking few seconds waiting for him to let us know how it had gone. He told us it went as well as expected and she had her chest closed up which was a good sign, but the next 48 hours where critical.

That night was long and agonising but she had stayed stable so they started to bring her round from sedation, she started to wriggle and open her swollen eyes, her whole body was swollen due to the meds and operation. We have never been so relieved to see our baby’s eyes – we fell in love all over again with our very strong, beautiful little girl.

Two days later our little girl was taken up to the cardiac ward as she had made such amazing progress, and at just five weeks old and two days after her surgery she gave us her first smile.

Incredibly, she was well enough to be discharged after only 11 days in hospital. We were over the moon but it was incredibly daunting taking her home and not being hooked up to monitors telling us that our baby was fine.

We are forever in debt to all the people who helped save her life. We were one of the lucky ones. 

The thought of a congenital heart defect going unnoticed in other babies and them not being as lucky as Elsie is very disturbing.

Further training for sonographers, midwives and pulse oximetry machines in maternity wards would make such a difference and hopefully save lots of babies.

Damian,  2018

Update 2020

Elise now has two leaky valves so is not 100% out of the woods yet. But, as you can see, she is just perfect!