I just didn’t know what was going to happen

20 December 2013        

Category: Survival and support

Hannah with nurse

Hannah, 7, was born with pulmonary atresia. She is extremely poorly, and has had five operations on her heart.

She will need a major operation in a few years to have her pulmonary valve conduit replaced. Hannah’s mum, Helen, explains the devastating impact this has had on the family.

A couple of hours after Hannah was born I had an instinct that something was not right. She was making funny noises and didn’t wake for feeds. I was told she was tired, but I wasn’t convinced. At home things did not improve. She still wasn’t feeding, even when using a bottle. At hospital, a cardiologist came to examine Hannah and I was told that she had a heart murmur.

At seven weeks old I went to see a friend and I remember saying to her that I felt if I put her down she was going to die. This just couldn’t go on so I went to my GP. At 3pm that day Hannah was sent to hospital in an ambulance for urgent tests. At the hospital we were told that she had complex cardiac problems. She had pulmonary atresia – a condition where the pulmonary valve does not form properly.

Taking action

It was a relief to know it had a name, and that there were things to try. She was taken into hospital on December 12 and discharged on Christmas Eve. She was able to feed but was very poorly.

In February 2007 , she had a pulmonary conduit inserted, which is a tube containing an artificial pulmonary valve. The whole situation would be terrifying without Mary. I just didn’t know what was going to happen. It was hard to see Hannah being given a general anaesthetic, and being sent to theatre. She will need the conduit replaced, we do not know when, but we know this for certain.

Altogether, she has had five operations and a host of other procedures too. My husband Andy and I had Hannah’s paediatric nurse Mary McCann by our side. I honestly don’t think we could have done this without her.

Support system

Mary has always gone out of her way to help us. I use to ask a lot of questions and she listened and explained everything. She would bring her heart models to our catch-ups and talk us through everything.

Things can often be really tough for us all. Sometimes when visiting Hannah in ICU you would see her chest exposed after it had been open, machines beeping, tubes coming out of everywhere. It takes you to places that you should never go as a parent. But Mary would always be there with tissues, holding our hand.

At the moment Hannah is okay, she is still symptomatic though. Sometimes she appears to go blue and can get extremely sweaty, other days you would not know she had anything wrong with her heart.

The whole situation would be terrifying without Mary.

The whole situation would be terrifying without Mary. If she wasn’t there I don’t know that Hannah would be alive today. Mary has given me the confidence to trust my instincts. If I feel something is wrong with Hannah I trust my gut. There have been times when I have doubted myself, but then I have Mary in my head saying I am doing the right thing.

Mary has also given me the confidence to be Hannah’s advocate. I have had to speak on Hannah’s behalf to medics and consultants about her condition. Sometimes, when you have had very little sleep and are extremely emotional, these meetings can be very stressful, and I often forget to ask important questions or will leave not completely understanding things. Mary will always ask how I have got on, and if she senses I need more information, she will help me to get it.

Mary sees lots and lots of patients and their families, but she always makes us feel like we are her only family.

Text Santa

Hannah appeared on ITV’s Text Santa live show.

Over 2 million people in the UK struggle with the devastating effects of heart disease. The money raised through Text Santa will enable us to continue to fund nurses, who provide vital care in communities and ensuring help is just a phone call away.

To donate £5, text SANTA to 70070.

Every penny of your donation will be distributed equally between the six charities.