Real Life Special – Have a Heart

e almost never have to go out looking for a story – in fact we’re honoured and a little humbled, by the sheer number of amazing families who contact us each season to ask if they can share their experiences; and we know from the response that we get to our regular real life features that our readers appreciate them too.

Whether it’s a story highlighting the incredible work done by a particular neo-natal unit, or a tale of one family’s journey while dealing with a particular condition, our hope is that by sharing their stories we not only provide an insight into the huge range of experiences that parents of babies and small children can undergo but also a valuable source of information and reassurance for parents who are going through something similar.

So, this Spring and Summer, we are bringing you a Real Life Special – three stories each season documenting the amazing, and inspirational, experiences of our readers and their children.
Firstly, for many of the parents that we feature in real life stories the medical treatment that their children undergo is a matter of urgency – life and death, even.

But the issues raised are different when the treatment is for something which is primarily cosmetic – and everyone in the NHS is telling you not to worry about it.

If the Cardiac Surgery Ward at Southampton had not existed on the day that Toby was taken ill, a trip to another unit in Bristol, London, or further, might have meant that he would not be alive today.”
For Alex Taylor and her husband, Kraig Whalley, it had been a long journey to the moment, in Autumn 2010, when they saw two tiny bean shapes floating on the sonographer’s screen.

Back in 2009, Alex had suffered a serious head injury which had caused her to lose her hearing in her right ear and her sense of smell. After this experience she and Kraig were both delighted to discover, just as she had recovered sufficiently to return to her job as a primary school teacher, that Alex was pregnant. Sadly, the 12 week scan revealed that the baby didn’t have a heartbeat. Alex was devastated. “I’d had a difficult time recovering from the head fracture, and I’d been over the moon to have some positive news. We were totally unprepared for what happened. All I could see were pregnant woman everywhere, and I just wanted it to have been me.”

After a further eight months of trying for another baby, Alex, then 39, was ready to give up. “We decided to buy a Whippet puppy instead – but within a week of getting the puppy I found out I was pregnant again.”
Alex was due to have a scan at eight weeks to check that everything was okay; however, in the meantime, new puppy, Caspar, had been diagnosed with a hole in the heart. “Caspar was due to have a scan to find out the severity of his heart problem. We weren’t sure whether he’d live very long and it rather overshadowed the baby scan.” But when the doctor showed Alex and Kraig a monitor with not just one, but two babies their attention was snagged. “We were very surprised. But he then explained that one of the sacs was quite a bit smaller than the other and unlikely to survive – apparently twin pregnancies are more common than we know, but one embryo often disappears before the first scan. We would just have been pleased to have one embryo survive.”

Despite the question mark over the survival of one of the twins, Alex and Kraig approached Christmas 2010 feeling happy and positive about the future. At the ten week scan both embryos were clearly still present and both had grown considerably. “We burst out laughing – and carried on laughing all the way out of the surgery.”

Alex was closely monitored during the pregnancy and, although she developed cholestasis, which causes itchy skin, and found the final trimester uncomfortable, she managed to carry the babies until her planned induction at 36 weeks. During check-ups, the babies’ heart rates were monitored, and each time one of the twins took longer to meet the assessment criteria. “Oscar’s heart rate consistently met the criteria at 10 minutes but Toby’s heart rate took longer every time,” explains Alex. “No one ever seemed concerned about it.”

At 36 weeks, Alex went into The Queen Alexandra Hospital in Portsmouth. During the induction process, she developed pre-eclampsia, and after hours of labouring with little progression, she was eventually given a caesarean. The twins were born and everything seemed to be fine. However, at a routine check-up the following day, Toby was diagnosed with a severe heart murmur. “We had already learnt quite a bit about holes in the heart from when our dog was diagnosed,” says Alex. “It was all too familiar and we already understood the severity of it. Kraig sat with his head in his hands and wept.”

The family were sent to the cardiac department at Queen Alexandra, where Toby was diagnosed with Tetralogy of Fallot, a congenital condition which involves three or four defects in the structure of the heart and results in the patient having low oxygen levels and related hypercynaotic attacks – similar to a fit, and causing loss of consciousness.

Toby was referred to Ocean Ward – the specialist children’s cardiac unit at Southampton Genereal. Alex and Kraig were given more information about Toby’s condition and asked to return a week later for an appointment with leading cardiologist, Dr Joseph Vettukattil.

In the meantime, after further monitoring at Queen Alexandra, Alex and Kraig were able to take Toby and Oscar home. “We were so relieved to return finally to what felt like normality. Family and friends were amazing – both my sisters stayed over in shifts to help ease the sleepless nights and busy days. We decided to tell only close friends and family about Toby’s condition because we wanted people to treat him like a normal baby.”

At Toby’s next appointment they were told that he would need surgery at around six months and that he was likely to be prone to ‘spelling’ – having hypercynaotic attacks. “The heart muscle goes into spasm, causing severe pain,” explains Alex. “It resulted in him screaming uncontrollably, and then losing consciousness.”

Toby started having these spells at around three months, and Alex found it very stressful – especially as Kraig was working long hours, sometimes away from home. “I felt very alone in having to deal with decisions about how serious Toby’s condition was getting, and I couldn’t have coped without the support of my parents. My mother would stay over when Kraig was away with work and both my parents would stay over once a week to enable me to have a night catching up on some sleep.”

One day Alex had a routine visit from the community nurse. The nurse was concerned about Toby’s blood pressure and called the hospital. During the course of the phone call Alex discussed Toby’s recent spells with a cardiac nurse. The nurse was worried by Alex’s description of Toby’s fits and consulted Dr Vettukattil, who decided to bring Toby into hospital immediately for an operation the following day.

Alex called Kraig, who was in Birmingham, and asked him to come urgently. “I drove to Southampton General that day, convinced that I could be returning home with an empty car seat,” says Alex. “When I arrived at hospital the staff were just brilliant, but the stress of being in a strange environment set Toby into regular spells. They started to happen about every 20 minutes. By now it was about 8 o’clock in the evening, Kraig had not yet made it to the hospital and I was coping with my baby spelling whilst I held him in my arms and rocked him to reassure him and calm him down. I was so relieved when Kraig arrived.”

Toby was sedated and, although staff were on standby to operate if necessary, he managed to make it through to the morning. “We met with the surgeon and were told that we could help take Toby down to theatre and that the whole operation should take around 5 hours.”

“It was one of the longest days of our lives. We sat outside the hospital, waiting to hear any news.”
Happily, the surgery was successful and Toby was moved to the paediatric intensive care unit. “Everyone who’s seen the photo of how he looked after the operation – very swollen, with numerous wires and tubes going into his chest and arms – has asked us how we coped, but actually we felt very relieved that he was alive, and we also felt very safe in the knowledge that he was in the best hands.”

Toby made a fantastic recovery and after two days he was moved from PICU to the high dependency section of Ocean Ward. “There is a real family feel on Ocean Ward. Some parents have been there for months, while their babies or children undergo the surgery that they need. A cup of tea and a chat in the ward’s kitchen is just the break you need! All the cardiac nurses are cheerful, helpful and ready to offer a shoulder to cry on and a reassuring word whenever you need one.”

Just seven days later, Alex and Kraig were able to take Toby home. He will still need further treatment over the years to come, but for now the improvement in his health is dramatic. “He started to put on weight and changed from having a blue-ish tinge, to being pink all over – in hindsight, we hadn’t realised how ill he had become.”

For Alex and Kraig, the experience was transformative. “Our experience at Southampton changed us as people for the better. Life is just so precious, and we find that we have become much less bothered about petty little problems. We met so many inspirational people on Ocean Ward  – families that cope with the most horrendous situations.”

The couple are enormously grateful, both to the Wessex Heartbeat charity which enabled them to stay in specially built accommodation and be close to Toby while he was on Ocean Ward and, especially, to the staff at Southampton General. “We would like to thank all the staff at Southampton General whose day to day job is to save children like Toby. We have our fingers and toes crossed that the government keeps the cardiac surgery unit at Southampton open.”