Hayley Tyler describes the survival battle faced by her brave daughter Phoebe…
‘I wanted my girl to have a chance of life, even if her hopes were slim’
- Age: 2 yrs
- From: Rotherham
- Mum: Hayley
- Siblings: Jake (13), Alicia (11) and George (6)
- CHD CV: Double outlet right ventricle, patent ductus arteriosus, ventricular septal defect, patent foramen ovale and pulmonary stenosis
“I was over the moon when my 20-week scan showed I was having a baby girl – but then the news I got when they looked into the scan was devastating. I was told my little baby had congenital hydrocephalus (fluid on the brain) and that there was concern about her heart. I’d never heard of congenital hydrocephalus so went home in shock and worry.
I was asked if I wanted to abort the pregnancy because the baby had more than one health issue, but all I wanted to do was give my daughter the chance of life – even though I knew that her hope of surviving was slim. We were referred to the heart unit at the Leeds General Infirmary, where she was diagnosed with double outlet right ventricle (DORV), patent ductus arteriosus (PDA), ventricular septal defect (VSD), patent foramen ovale (PFO) and pulmonary stenosis.
Phoebe Rose was born prematurely at 35 weeks, weighing just 4lb 13oz. When my waters broke I was rushed by paramedics to the Leeds General Infirmary for an emergency c-section. Phoebe was just two weeks old when she had her first operation – a VP shunt was fitted to drain excess fluid from her brain. She had her heart surgery at 15 months old to repair her DORV, perform a left fallots-type repair, and to close some VSDs.
Words can’t describe how I felt, it was like my world had come crashing down. She went down to theatre at 8:45 in the morning, and I held her in my arms until she went to sleep. After six and a half hours I finally got the call I’d been waiting for – Phoebe had come out of surgery and all had gone really well.
Even though I knew what to expect, nothing could have prepared me for what my little girl would look like attached to all the drains, wires and machines. It was mentally draining – I longed to pick her up, cuddle her and feed her, but I knew I couldn’t. As she recovered she had visits from her nan every other day, who was looking after Phoebe’s brothers Jake and George and sister Alicia. Phoebe was difficult to handle back up on the ward because of her size, but she got all the nurses after her – she’d frown and give them very stern looks!
Eventually, we came home – Phoebe left with a wound infection so had to have antibiotics and weekly visits back for check-ups until it cleared up. Phoebe’s future is looking good. It’s not far off a year and a half since her surgery. She will need more surgery, probably when she’s in her teens. We have to keep an eye out for blockages with her VP shunt on her head – she had a blockage when she was about six months old and had to be rushed back into theatre.
But, considering we didn’t think she would walk or talk she is doing everything and is so bright – she’s amazed everyone. She has got some developmental delays, but she just keeps going. She’s a very friendly little girl and is always smiling and chatting (although she does have a temper on her when she’s in a mood!).
She brightens up any room when she’s around – she loves her mum and brothers and sister, and adores her nan and granddad. As a heart parent, my advice to anyone else in my position is to keep strong, because you will get through it. The staff are like your extended family, and are a shoulder to cry on if you need them. You learn to live with the worry and try to treat your heart child just like any other child. I’m one lucky mum to have Phoebe – she’s my little miracle.”