Thanks for visiting my page. I'm raising money for the British Heart Foundation's research by running, walking or crawling the 2020 London Marathon (now October 2021) and I'd be so grateful for your support. I totally blame my daughter Lily for this madness - her story is as follows:

In April 2015 we found out we were expecting our second child. The pregnancy progressed normally until the 20 week scan when the sonographer found a problem with our baby’s heart. We were referred to Birmingham Women’s hospital for a cardiologist to take a look at Lily’s heart and we were given the devastating news that Lily had a complex condition called Double Outlet Right Ventricle and a large VSD. We then continued to have regular follow ups at the women’s hospital and with each scan they picked up other issues with Lily’s heart which meant they weren’t as confident they’d be able to fully correct her condition.

On New Year’s Eve 2015 our little warrior made her swift grand entrance into the world where she looked absolutely perfect - you would not have believed there was a thing wrong with her. We held her briefly before she was whisked off to neonatal ICU where they monitored her for a week and during this time she seemed like a perfectly healthy baby.  About a week later we were discharged from hospital after a neonatal consultant scanned her and decided that she was stable enough for discharge. 

A few days later we had an appointment at Birmingham Children’s Hospital for her cardiologist to take a look at her heart. He picked up yet another problem, with the mitral valve; and again explained that Lily’s condition was complex and a repair might not be possible.  As time progressed, Lily started to become increasingly breathless and tired and had dropped back to her birth weight.

Lily was soon admitted to hospital for showing signs of heart failure and had fluid on her lungs as too much oxygen was going to them. Because of this Lily had her first open heart surgery - a PA (pulmonary artery) band.  At this point the surgeon was still unsure whether her heart would be able to cope with a bi-ventricle circulation as she had ventricular disproportion, a dysplastic mitral valve as well as double outlet right ventricle and a large VSD. The PA band, however, allowed her to grow and hit her milestones and amazingly she learnt to walk at ten months of age despite her heart.  She had a catheterisation at thirteen months and at sixteen months Lily had her second successful open heart surgery. 

To look at her now at five years of age, you would not believe what she has been through. Lily is now at school, goes to dancing, swimming and gymnastics lessons.  She is so full of life and we will always give thanks for the early detection of her condition as it meant that she was given the best possible chance and care, even before she was born.

Due to the complexity of Lily’s condition she will have life long follow up and will require future surgery. It is the research that the British Heart foundation do, which allows for early detection and for children like Lily to lead the fullest life they can. Research needs to continue to both improve existing treatments and enhance understanding as to the reason congenital heart defects occur.