Zoë’s Story

Zoë was born on 17th September 2002 weighing 5lb 13½ oz, a little on the light side, but she was approximately 1 week early. All seemed well and we never thought anything serious was wrong with our child. During the first few weeks we noticed Zoë never liked lying on her back when getting changed, as if it was uncomfortable for her. She would also not settle when laid down for naps only falling asleep in the pram or on your chest. Again, this is not abnormal behaviour for a new born baby. Being new parents we thought this was normal, with Zoë just being an unsettled baby, particularly after raising these concerns with both the health visitor and her GP.

With Zoë being breastfed it was hard to work out how well she was feeding. Because of this we would take her to the local baby clinic every week to be weighed. It was during one of these visits that a trainee health visitor became concerned about Zoë’s colour and arranged for us to see her GP, who immediately referred her to hospital. Upon arrival at the RVH, Zoë was rushed straight through and was suddenly surrounded by people. It was then we were starting to think things could be serious. Eventually we were informed that Zoë potentially had a heart defect. She was moved up into Clark Clinic, where all children with heart conditions are looked after, where we were given the news that Zoë had a complex heart condition called Pulmonary Atresia with Hypoplastic Right Ventricle. We were told Zoë had a big battle ahead of her and before the night was out Zoë was christened and moved into intensive care. We were fortunate enough to be given use of the parent’s accommodation at the hospital, provided by Children’s Heartbeat Trust.

The next morning Zoë had to have a diagnostic catheterisation with the most likely possibility of going straight into theatre for her first operation. To enable this we had to sign consent forms for both procedures. This is when it becomes real, having to sign a form after discussing mortality with a doctor. So with Zoë off to theatre, the only thing to do was wait. We spent most of the time back up in the parent’s accommodation, somewhere private and quiet where you can get a cup of tea and some rest. Finally the news came back that Zoë was out of theatre and we would be able to see her soon.

Zoë spent the next couple of days recovering in intensive care before returning to Clark Clinic. She surprised us all with how quickly she recovered and gained enough strength and stability to return home. In total Zoë spent one week in hospital, and the parent accommodation allowed us to be close to her the whole time. Who’d have thought something as simple as a bed would mean so much? Anybody that has tried to entertain an infant for a whole day will know this is not an easy task, try doing that in the confines of a cot in a hospital ward. A task made easier by some of the toys available in Clark Clinic thanks to Children’s Heartbeat Trust.

Zoë has went on to undergo two more catheterisations and two further open heart surgeries. We were fortunate enough to have all these in Belfast with Mr. Gladstone, and on every occasion we were lucky to avail of the parent accommodation.

After her third operation Zoë was put onto Warfarin. This initially meant having to visit the hospital each week to have her INR checked and dosage reviewed. Children’s Heartbeat Trust was then able to provide us with our own test machine and training, enabling us to self check and medicate Zoë’s Warfarin.

As Zoë has grown older we have benefitted from Children’s Heartbeat Trust’s activity days and in particular the SummerBlasts. This has allowed both us and Zoë to meet similar teens and their parents. These are wonderful days that let the kids do some activities in a controlled environment that they may not normally have got to do due to their conditions. Zoë looks forward to SummerBlast each year, meeting new friends, and having a blast! These have really boosted Zoë’s confidence, and have given her the opportunity to meet other children with similar heart conditions sharing their experiences. Being able to meet some of the young adults is a reassurance to us as parents, letting us see what can be achieved.

With Zoë turning fourteen this year, she will soon be starting to make use of the transition clinic. This is a clinic to smooth moving from the children’s hospital to the adult hospital. Up until recently once you turned sixteen you moved straight into the adult hospital. As you can imagine this could be very daunting for a young girl. Children’s Heartbeat Trust have managed to secure a bed in an intermediate area for situations like this. They have also developed an app for these young people, which helps with questions and concerns with moving to the adults hospital and enables them to take control of their condition and their medication.

We have also had the opportunity to have a paediatric first aid course through Children’s Heartbeat Trust which has provided us with the skills and information of how to deal with a number of first aid situations.

Children’s Heartbeat Trust is committed to providing the best care and support to all children and their families; they work tirelessly so that our children have the best possible treatment and the services they deserve. We cannot thank them enough for everything that they do.