Congenital Heart Defect Awareness Week: Williams Story

william
(Last Updated On: February 9, 2016)

This week (7th – 14th February) it is Congenital Heart Defect Awareness week.

Here is Williams story:

Baby William Philip Skingle, born on 11th February 2015. William had an antenatal diagnosis of Hypoplastic Left Heart Syndrome.

William and family

William and family

Williams dad Phil told us more:
“After a difficult start to the pregnancy we were both very excited to attend our 20 week scan at Torbay Hospital. All seemed well and we were told we were having a boy, and then things changed. The nurses swapped over and a consultant came in to give advice.

“We were told our baby had a serious heart defect and we would have an emergency referral to Bristol Childrens Hospital. I remember us sat in a quiet room crying out of control and not knowing what was going to happen. We were given an appointment at BCH the following day. On arrival we met a specialist Paediatric Cardiac Consultant who did an Echocardiogram. The consultant took us in a side room with a liaison nurse and gave us the diagnosis.

“Our boy had a rare extremely serious heart condition called Hypoplastic Left Heart Syndrome. Its a defect which means the left of his heart is formed properly, meaning only the right hand side of his heart worked. This condition is only palliative and one day our boy would end up on the heart transplant list. He would need at least 3 open heart surgeries to allow his blood to be circulated. He was given a 50% chance of survival of the 1st operation.

“We tried to carry on with our lives the best we could having 4 weekly appointments in Bristol. It was decided my wife Debbie would be induced at 38 weeks as they couldn’t risk our baby being born away from hospital. At our 36 week appointment at Bristol it was decided due to an illness with the specialist surgeon that our boy would have to be born in London and have his 1st surgery there.

“Three weeks later, William Philip Skingle was born at St Thomas Hospital London and immediately transferred into Paediatric Intensive Care Unit and awaited his essential operation whilst being kept alive by drugs. At 5 days old William was put to sleep in his daddys arms and passed to surgeon Prof David Anderson who conducted an 8 hour open heart surgery on him including the use of a bypass machine.

In April 2015 William had an MRI scan under General Anaesthetic in London to plan his next surgery. It was decided from this that Williams next surgery would be on the 4th June 2015. Again William was handed over to Prof Anderson, world wide respected heart surgeon for a 7 hours open heart surgery.

William is currently doing well, but is still only on the start of the long road ahead. This week he celebrates his 1st Birthday, something this time last year was out of sight. William will have further surgery when he is 3yrs old to allow his right side of his heart to completely take over the whole job. Unfortunately, although this is what William needs, in time his heart will fail, leading him in desperate need of a heart transplant – should there be on available.

Phil added:
“Being National Heart Week we want to reach out to as many people as we can. The day before our baby boy was diagnosed we weren’t heart parents either, and we didn’t need to be aware. These things change over night.

“Heart Families South West is an amazing support group that supports families with congenital heart disease. The support is second to none, with everyone being a volunteer and having children with CHD they are in the same boat as you. They arrange days out for the group which is now growing,”

You can find out more about organ donation and sign up here:
https://www.organdonation.nhs.uk/

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(Author)

Team account for We Are South Devon.