Daisy’s mum, Lucinda, said:
“Our experience with congenital heart disease began at our 20 week scan. Having previously had a history of problems, we were told that baby would be checked very carefully. Upon her silence we immediately knew the sonographer had found something. Baby’s heart looked flappy in comparison to my other daughter’s scan.
“We were told that our baby had an atrioventricular septal defect (AVSD). Having previously lost a baby to a different birth defect, we were comforted in the fact that so much research and development had gone into heart related problems.
“Whilst she would still need surgery to survive, the success rates of our baby’s surgery were very promising. We had no idea so many babies were born with heart related issues.
“We very quickly were seen by the team at Leeds who comforted us and discussed treatment for our baby, whom we named Daisy.
“We had regular appointments with the team and Sandi our counsellor. With support from her and the team making sure we were looked after, we found great comfort during a stressful time.
Daisy had life-saving open heart surgery for her AVSD at 5 months old at the Leeds Congenital Heart Unit, and Daisy and her family were supported at every step by Children’s Heart Surgery Fund.
“Daisy had open heart surgery at 5 months old at Leeds. She did amazingly well, and we were only in hospital for a week. The first days were tough to see. Her surgeons we can’t thank enough. We were comforted by the staff in PICU, who cared for Daisy so lovingly after her operation. She always had her blanket and the teddy from her sister by her side.
“After her drains came out, she began smiling again and we started to get our little girl back. She has been doing well at her regular check-ups, where she likes to be cheeky and wiggle during her echo. We have just celebrated Daisy’s first Christmas thanks to the Leeds Congenital Heart Unit.
“We had travelled from Hull to Leeds for many appointments, but during Daisy’s surgery we were concerned how we would afford to stay over. My partner had been off work a few weeks with stress and I was still on maternity leave.
“It completely made a difficult situation just that bit easier. It was one piece of the jigsaw that was in place that we didn’t have to worry about during uncertain times.”
“Children’s Heart Surgery Fund’s support meant we had somewhere to stay. This was such a weight lifted off of us. It was such a relief knowing that during our scariest times when our baby was in intensive care we could be by her side, without getting into the financial struggles paying for accommodation.
“It completely made a difficult situation just that bit easier. It was one piece of the jigsaw that was in place that we didn’t have to worry about during uncertain times.
“Then there’s Katie Bear. My eldest really struggled when we returned home as she was frightened her sister had new scars. Slowly she began reading books to Daisy, with Katie Bear by her side. Katie Bear is not only something to treasure for Daisy, it helped her sister be comfortable to adapt and interact with her again.”
13 babies are born every day in the UK with a heart defect, making CHD the most common birth defect.
In our region alone, Children’s Heart Surgery Fund is there for over 17,000 babies, children and adults like Daisy every year, who are living with a heart defect. We’re there to support their families too!
Help us to raise vital funds this #HeartMonth, by making a donation to our essential and life-saving work. Thank you.
Maisy
Maisy was diagnosed with Down syndrome shortly after birth, and at just 7 months old, she had open heart surgery at the Leeds Congenital Heart Unit. Her mum Laura has kindly shared their journey - from diagnosis, and the care Maisy received, to the support they’ve had...
Blake
Blake's mum, Chelsea, said: “My partner Matthew and I found out that Blake had something wrong with his heart when he suddenly was really poorly on 30th September 2022. “We took him to Chesterfield Hospital to be seen and Matthew and I were told he had sepsis,...
Albie’s story
written by mum, Abigail"This is Albie. He is 6 and a half months old. At his 8 week check up, they discovered that he had a heart murmur. "After being referred to Leeds General Infirmary at four months old, we learnt that Albie had Tetralogy of Fallot and will need...