Action Medical Research

“She fills our hearts with joy”

Louise George, 37 from Bucks, explains how Action Medical Research helped her daughter, Jessica, who has hypoplastic left heart syndrome

We were so excited to have our 20-week scan as this was our first baby and everything was going well. During the examination, the sonographer mentioned she couldn’t get an accurate reading and asked us to go for a little walk. When we returned, another staff member was present. My instincts told me something was wrong. I was working as a midwife, so understood the medical terminology I was hearing and knew they were discussing our baby’s heart. Michael and I were taken into a “room with tissues” (as I call it) and a midwife told us what they’d seen. She said the left side of our baby’s heart was very small and we’d be sent to the John Radcliffe Hospital in Oxford for a more detailed scan. We were given some British Heart Foundation leaflets and warned not to Google. The first was about the hole in the heart – picked up on the scan – it was scary but we were still hopeful. The next explained coarctation of the aorta – a narrowing of the artery. It was alarming but sounded possible to correct with surgery. Finally, we read the leaflet about hypoplastic left heart syndrome (HLHS) and were terrified. It dawned on us that our baby could die.

We got a scan appointment that afternoon and our worst fears were confirmed – our baby to be, Jessica, had HLHS. This meant that although her heart was just about able to pass blood around her body supported by my circulatory system, she would need urgent surgery to save her life once born. We were given three options; terminate the pregnancy, opt for compassionate care (make her comfortable until she passed away naturally) or to go down the surgical route, which is what we chose. We asked to be referred to the surgical team at Great Ormond Street Hospital. At 22 weeks I went for another scan. It was so upsetting to be told that, as Jessica’s condition was so severe, they didn’t think surgery would be viable and doubted Jessica would survive. But we learnt there was a radical surgery option in Boston, USA, which could improve her odds of survival while still in the womb – referred to as in-utero surgery. We set about researching to find out if it would be the right thing for us to consider.

Soon after we were contacted by Dr Wilson, a consultant at Oxford. He hadn’t performed this procedure but he had some experience of in-utero heart surgery and was willing to try, provided we knew the risks. We gratefully agreed and he performed the surgery when I reached 28 weeks. The risk of Jessica not surviving was estimated at between 10-50% so I was terrified. But despite my anxiety I put my trust into his hands and thankfully the surgery to widen the hole in Jessica’s heart was successful. We had hope, and it was the most incredible feeling when she moved again after the operation; we knew we had a fighter. Throughout the whole procedure, Michael was an amazing support and helped us both to stay strong and positive.

Later, we opted for Jessica to be born at Southampton Hospital as it had an excellent cardiac unit. I went into labour at 38 weeks and in September 2011, Jessica arrived weighing 5lb 10oz. After 30 minutes on the neonatal unit, she was taken for her first heart surgery. She was eight hours old. This op was to open the hole between the top two chambers of her heart and place bands on the blood vessels in her lungs – she was so tiny it was heartbreaking. Eight days later she had another op to put a stent in. Together these cardiac operations are called the hybrid procedure, for very small babies who cannot cope with both being performed at once. Our baby girl came home at four weeks old and we were overjoyed. The second two-part operation was at four and seven months. It was a roller-coaster as she had a bumpy recovery after contracting paraflu, which meant a 16-day stay in intensive care. There were moments when we didn’t know if she would pull through – but our fighter did just that! Now Jessica has regular appointments for cardiac catheter-based procedures to monitor her heart function. She’s now five-and-a-half and enjoying school. Funnily enough, she has a friend with a different heart condition and they often stay in on their break together, it’s nice they have each other. She’s like any other child except she turns blue when she’s cold and gets out of breath easily. I had extra heart checks when I was pregnant with Sophie, now three, but thankfully everything was OK.

In the next two years Jessica will need her final planned surgery to improve her heart function. Through Action Medical Research, a cutting-edge high-definition 3D scanner has been developed, which creates a virtual model of the heart for surgeons to study and understand exactly what the patient can tolerate. It gives us confidence to know that this amazing technology is available to personalise further heart procedures Jessica will undergo. Five years ago we never dreamt we’d make it this far and it’s been a blessing for us to watch our beautiful daughter grow – we thank God every day for what we have.

THE FACTS – Action Medical Research

  • The charity funds crucial medical research across the UK to make a difference to the lives of sick children.
  • They play a huge role in medical advances including techniques to save unborn babies at risk of brain damage and life-threatening conditions.
  • One in nine babies born in the UK need some form of special care, the charity aims to reduce the number of pregnancy complications and increase care for vulnerable babies.
  • The charity also supports research to tackle meningitis and septicaemia, and other potentially deadly infections like pneumonia and MRSA.
  • Visit action.org.uk for more info.

BIG GIVE UPDATE

The money raised will help researchers develop better ways to predict how tiny babies with the life-threatening heart condition hypoplastic left heart syndrome will respond to surgery, helping doctors plan the best approach for each baby.

As told to Sally Evans
Photos Ben Rector/Action Medical Research

To help Action Medical Research celebrate Mother’s Day mum Louise, whose daughter Jessica has a rare heart condition, kindly shares her thoughts on the wonder and worry of her very special ‘mummy journey’.

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