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Alicia's Story

Alicia looked like a little doll. She was tiny, just 4lbs 4oz. The next morning the doctor told us she had a heart murmur. We didn’t worry too much at this stage, just hoped for the best. I was still dazed by her early arrival.

Alicia’s heart murmur didn’t resolve itself, we began to go through a series of tests and visits to various departments within the maternity hospital and Bristol Royal Children’s Hospital.

‘’Worries about the future’’

It is difficult to describe the emotions as new first time parents you go through when you are told there is something wrong with your baby. From immense highs to extreme lows and worries about the future and what it will mean for your baby. All time you have a stream of visitors wanting to welcome your beautiful baby, whilst you are still trying to come to terms with the uncertain news.

The doctors told us that Alicia would need to have a temporary operation when she was big enough and then probably at around 20 months would have corrective open heart surgery.

In the meantime she was in danger of having ‘blue spells’ due to lack of oxygen in her blood. If this happened we would need to take her to the Bristol Royal Children’s Hospital as soon as possible. We soon became practised in administering daily medicines and to attending various hospital departments and professionals, and at understanding complex heart diagrams penned by the consultant.

‘’Handing over your baby to the surgeon is very difficult’’

What do you do during those awful hours when your child is in theatre and you are just waiting for some news, any news? When you are finally reunited, there is an array of tubes and monitors all over them, not to mention a large wound on their chest.

For us, these have become mercifully distant memories but ones we cannot ever forget. We are always aware of what many other families are going through and who find themselves in a similar situation to ours.

Through the South West Children’s Heart Circle there are many families who are willing to share their experiences and help, working to ensure children with congenital heart defects are able to receive the best practice and care for their child’s condition. The South West Children’s Heart Circle are members of the Children’s Heart Federation and work with many other children’s heart charities to support children and their families.

 

Produced by IMS Consulting