Lily's story

Told by her mother Katie

In April 2015 we found out we were expecting our second child and we were obviously thrilled to bits. The pregnancy progressed normally until I had my 20 week scan, the sonographer found a problem with our baby’s heart and referred us to a consultant at our local hospital. 48 hours later I was told by a consultant at New Cross Hospital that there was a moderate sized hole in the baby’s heart and there was a high probability that the baby could have a genetic abnormality. I was offered an amniocentesis but refused as I was 22 weeks pregnant at this point, instead we paid privately and had a non invasive test which ruled out some genetic abnormalities.

In the meantime we had been referred to Birmingham Women’s hospital for a cardiologist to take a look at Lily’s heart, this didn’t go as we had hoped and we were given the devastating news that Lily had a more complex condition called Double Outlet Right Ventricle and a large VSD, we were told our tiny baby would need open heart surgery at three to six months of age, 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, 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 (at this point she was so well I was convinced they’d made a mistake at the scans).  However 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.  He sent us home with some diuretics and an appointment to see him in two weeks.

The following day Lily’s health visitor came to weigh her and found that she had lost a little bit of weight, she said she would come back the next week as it could just be a difference with the scales. As the week went on Lily started to become increasingly breathless, she was also tired and was vomiting and when the health visitor came back to weigh her Lily had dropped back to birth weight.

The health visitor advised us to take Lily to Birmingham Children’s Hospital A&E where she was admitted for showing signs of heart failure and she had fluid on her lungs as too much oxygen was going to them. Because of this Lily had her first surgery, a PA (pulmonary artery) band was fitted at four-weeks old.  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 and a dysplastic mitral valve as well as double outlet right ventricle and a large VSD.

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However the PA band allowed her to grow and hit her milestones, she amazingly learnt to walk at ten months of age despite her heart.  She had a catheterisation at 13-months but again they could not be sure if the corrective surgery could be done due to the position of her VSD in relation to the aorta.  But at 16-months Lily had her second open heart surgery and thanks to the skills of the surgeon at Birmingham Children’s Hospital she was able to have a repair that has given her normal circulation.  Due to the complexity of Lily’s condition she will have life long follow up and possible surgery in the future.

To look at her now you would not believe what she has been through. Lily has started school and does dancing and gymnastics.  She is so full of life and we will always give thanks for the early detection of her condition as it has meant that she had the best possible care even before she was born.

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