Georgia’s back on track

In a bid to encourage others to get involved and join the fight against heart and circulatory disease, York father of three Chris Bojke, 43, a senior research fellow, talks about his own family's experience after his youngest daughter was diagnosed with a hole in the heart.

At Georgia’s routine six week check-up her GP detected a palpable heart murmur. Within days we were booked to see a paediatric consultant at York General Hospital and a diagnosis of a single large VSD (hole in the heart) was made.

The consultant said a number of things: that sometimes these holes close up of their own accord, otherwise surgery was the only alternative. He was reluctant to give us a probability on these as it wasn’t his area of expertise. He did say this appeared to be her only problem (which was relatively rare – usually heart problems come in batches) and that from a clinical perspective, this was fairly routine and manageable.

We were immediately referred to see the Leeds children’s cardiology specialists who had an outpatient clinic at York once a month. The NHS system worked as well as we could have possibly hoped it would.

At the clinic, the cardiologist felt that, due to the position of the hole, it was unlikely it would close and surgery would be inevitable at some point.

Nevertheless, Georgia seemed to be doing ok and there was no immediate risk of heart failure.

The choice we had was to defer some highly invasive surgery that carried a very small, but very real risk of death or other serious outcome (permanent pace-maker), but also had a very high probability of, I suppose put simply – curing her, and allowing her to have a normal life. We decided to wait and see.

One main consequence of Georgia’s condition is that such babies ‘fail to thrive’. The extra work their body has to do to overcome an inefficient heart means that energy that should be diverted towards growing is diverted to making the heart work faster.

Georgia didn’t grow as rapidly as she should, and found it difficult to eat.

As such, she was on lots of medications – three sets to be taken two or three times a day, and a highly calorific diet.

Our main problem was with feeding and getting Georgia to grow. At no point did there seem any real threat of additional damage to the heart or other organs. But feeding was a real issue. Virtually every meal was a battle as she suffered from reflux.

You'd be told to get 20 spoonfuls of creamy porridge down her, but you'd be happy with maybe 10. After two spoonfuls (over 20 minutes), Georgia would start gagging and you'd be left with a choice – try and coax another few down her or just give up.

You'd always try just one or two more, but it was virtually always the same consequence: she’d eat one more spoonful and then throw-up everything.

You’d sit there covered in sick and just be so so angry, so frustrated and so close to tears. Angry at yourself for pushing it, for wasting the two spoonfuls you’d got down her. And this happened every single meal for months.

But it seemed we might be making some progress.

Georgia’s hole had been down-graded from large to medium, there was some small weight gain and our monthly visits to outpatients had been switched to every three months. However, after Christmas Georgia caught a chest infection which she just couldn’t fight, heart failure looked inevitable and surgery was the only option.

We opted to have Georgia’s surgery at the Freeman in Newcastle. Due to the demand for the more urgent and specialist care at Newcastle it was difficult to get a date for the surgery, and when we did, it was often postponed. Once we were actually en route to the hospital and it was cancelled.

Whilst we completely understood the prioritisation of more urgent cases over Georgia, this uncertainty greatly added to the stress we were already under.

The Freeman was a real eye-opener. We knew it had a fantastic reputation and as such that it did some of the more complex operations, but we had no idea.

In that relatively small unit we met families from all over the UK. Virtually everyone there had children with far more complex problems than Georgia that would require a more serious operation and more operations over time.

It was quite a humbling experience – we’d gone from a position where we were feeling quite sorry for ourselves to realising that there were other families in far worse positions than us.

It really made us count our blessings: of all the severe heart problems, Georgia had the least severe and one which could be fixed in one go; we had tremendous support from Laura’s family and were so lucky they lived relatively locally, and work had been fantastic.

This wasn’t the case for virtually anyone else on the ward, but it was amazing how cheery, determined and resourceful everyone was. You couldn't find anyone who felt sorry for themselves - they were happy their children were alive and getting expert care.

Georgia had her operation the day before her first birthday. Taking her up to the operating theatre was the worst moment of my life.

Handing her over to the anaesthetist was awful, physically shaking, wanting for all the world to switch places with her.

You get the opportunity to say goodbye as they put her under in theatre, in a room with all that equipment, that machine which is going to keep her alive as they stop her heart.

It’s not something they can prepare you for. The operating staff were brilliant though – managing to let you know how important it was, but at the same time how routine it was for them; that they had done this hundreds of times and knew what they were doing.

All being well, they estimated that it would take four hours to do the operation and get her back in a state in which she could be moved to intensive care.

In many respects I had expected that this would be the worst time, but actually from the moment we left Georgia it started getting better.

I had complete confidence in the operating team and it just felt like this was the turning point.

We got back to the unit just before four hours was up. They said the surgery had gone exactly as planned, was successful and ‘without incident’ (such beautiful words!) and they were in the process of moving her to intensive care.

We’d been given a tour of intensive care so knew what to expect. Georgia was full of tubes but we’d been told to expect that. Over time the tubes came out one by one and in less than 24 hours she was ready to go back to the heart ward.

Within three days of open heart surgery she was sitting up and eating pizza - she was better than she had been at any point in the six months prior to her operation.

When the surgeon came to check on progress, he said the hole in her heart had been much larger than the scans had suggested – there was no way she could’ve lived anything like a normal life with that problem uncorrected.

Less than a week after being admitted we were allowed to take Georgia home. Over a really short period she was able to come off all medications.

Her scar is amazing. At first I thought we’d hate the scar – a permanent disfigurement that she would have to live with and would remind us of the struggle we’d had with her.

But having had the surgery, the scar sort of became her little badge of honour – a reminder of the struggle she had overcome.

It was always very neat and smaller than I imagined it would be, but it has faded to the extent it now looks like she might have had a paper cut down her chest!

Follow-up appointments revealed she was progressing very well and there were no signs of issues in the scans.

But we knew that already, she was just such a different child. She now has an appetite, she’ll go crazy if she sees you eating something and she doesn’t have it. And now she is the best behaved of all three of them at tea time.

You don’t need to call her to the table twice and whilst the other two will be fussing about the colour of their cups, or whether they want a folk or spoon, Georgia will be motoring through her food.

Physically she has caught up to her birth-weight percentile, so she is a little bit small for her age but at her worst she wasn’t even on any scale, too light to be remotely compared to anyone her age.

At the last outpatient appointment at Newcastle (care is now being switched back to Leeds) they confirmed what we already knew – she’s fixed.