Every baby deserves to have a chance

Bliss: Bitter experience led footballer Phil Neville’s, family to raise funds for premature babies.

By Cassandra Jardine
Published: 7:00AM GMT 18 Jan 2010
Source: Telegraph

Money can buy footballers and their wives a great many luxuries. These include the flat in which I meet Phil and Julie Neville, a glass and marble penthouse so high that, on a snowy day, the view over Manchester to the Pennines and Peaks could be mistaken for the Alps.

But there are some things that even the captain of Everton can’t buy, among them a full-term pregnancy and a healthy baby. That truth, Phil Neville discovered nearly six years ago when his wife, Julie, was rushed to hospital after her waters broke just
28 weeks into her second pregnancy. “It changed our lives completely,” says Phil, who looks like a fish out of water, perched muscularly on the leather sofa during a rare break from training.

Everything the Nevilles experienced in those traumatic first few months, and since, has made them such passionate advocates of improved care for premature babies and their families that it has become, Julie says, their “crusade”: “It’s the most horrific thing watching a child fight for life.”

Julie’s clothes don’t look as if they come from Primark, but compared with other football couples the Nevilles, who have been together for 13 years, are considered the essence of self-restraint and stability. Recently, they have added to their reputation for being the sport’s good eggs by becoming dogged fundraisers for Bliss, the charity that counsels families with premature babies, researches into causes of prematurity, and presses for the spread of best practice to improve outcomes. “People don’t realise that prematurity (at 80,000 births a year) is twice as common as breast cancer,” explains Phil, “nor, given the rise in premature births, how poorly funded [support is].”

Surprisingly, perhaps, arousing sympathy for babies born too small, too young and too sick is not easy. The NHS is presumed to do the job but, as the Nevilles found, there is much else that needs to be done if babies, and their families, are to come through the experience minimally scathed.

The other misconception the Nevilles find themselves up against is that the prospects for most premature babies are so poor that it would be kinder to leave them to die. Entertaining a similar thought while in the Intensive Care Unit of St Mary’s Hospital, Manchester, Phil remembers asking an exhausted nurse, who was working all hours to save his baby’s life: “How do you do what you do?” Her response moved him deeply: “She laughed and said: ‘If these babies were adults, and as sick as this, they would be dead – but babies know nothing but to fight.’ ”

In the dark days of January 2004, Isabella Neville’s chances of survival looked bleak. Rushed to hospital when her waters broke, Julie spent two weeks in a labour room, with Phil on a camp-bed by her side. Neither of them could sleep because of constant checks and, when they were shown the intensive-care unit where their daughter would be taken, Julie felt sick. “The heat is so intense that most people don’t even wear a shirt. You don’t realise that babies this small exist. It was horrible seeing them covered in wires and tubes.”

On February 2, at 30 weeks’ gestation, Isabella was delivered by emergency Caesarean because Julie’s placenta had come adrift, she was haemorrhaging and Isabella’s heart stopped. Weighing 3lb 3oz, she went straight into ICU while Julie was transferred to a high-dependency unit. “It was 36 hours before I even saw my baby, and she nearly died before I did because her breathing stopped.”

After a month, Julie was sent home without Isabella. It proved traumatic. “The hardest thing in the world is to leave a child who is critically ill. I had milk, but no baby. She couldn’t suck, so almost all her food was given by tube, and she needed constant blood transfusions. I kept her photo by our bed; Phil thought I was psychotic because I kept imagining that she was crying and no one was going to her.”

After three months she was allowed to bring her home. “I thought it would be like bringing home a full-term baby but she was incredibly sick. I could have employed 10 nannies to help me, but I wanted to do everything for the children myself, especially after being apart from Isabella for so long. I had to carry her everywhere because she couldn’t sit up – and I had to look after our son Harvey, who is only 17 months older. As a result it took me two years to recover from the Caesarean, instead of the normal six to eight weeks.”

Throughout the ordeal Phil gave Julie emotional support, but he also struggled to maintain some kind of normality by working. Even after sleepless nights by his wife’s hospital bed he would turn up for training, running far behind the rest of the squad because he was so exhausted. After trips abroad, his flights often would not get in until 2am but he always made it home or to the hospital. “It’s not my style to take time off. I’m quite old-fashioned. I don’t miss work,” says the defender who, with his brother Gary (who plays for Manchester United, as Neville did until 2005), holds the record for England appearances by two brothers – 142.

“I wouldn’t expect him to stop work,” says Julie, who spent most of each day fighting to get food into Isabella, who had difficulty keeping food down. “For two years she vomited up every feed. If we went out, I took five bags full of clothes and sometimes she would make such a mess that I had to dash into Mothercare to buy another pushchair and yet more clothes, as I couldn’t clean her up. The vomiting was so severe that someone once asked me if we needed an ambulance.”

As the months passed and Isabella failed to reach any of the usual milestones, the Nevilles became increasingly convinced that there was something wrong with her but, because she was putting on weight, doctors were unconcerned. The strain of those days, and the problems caused by discontinuity of care between the hospital and the clinic she attended afterwards, leave them convinced that home visits are essential. Bliss arranges for counsellors to advise parents who bring their premature babies home, but the Nevilles did not have one. With such guidance they feel sure that they would never have had to endure 18 months before seeking help.

An MRI scan duly revealed that Isabella had suffered a stroke while in the womb, resulting in cerebral palsy affecting her muscles. Their daughter would probably never walk or be
potty-trained, they were told. But a diagnosis, however grim, was a relief. “I felt angry because we had wasted so much time,” says Phil.

The Neville family is a stranger to physical weakness. Phil and Gary’s father, Neville Neville, was a league cricketer in Lancashire; Phil was himself captain of the under-15 England cricket team before switching to football; and their sister, Tracey, is a netball international. Seven-year-old Harvey is already showing exceptional talent at football, skiing and swimming. Yet, even though Isabella will never wear an England shirt, she has from the start been included in family activities.

The NHS provides various kinds of therapy, but it was the Nevilles themselves who adopted a tough love policy of not doing anything for their daughter that she might learn to do for herself. It has paid off. Gradually she has learnt to sit up, walk, talk, cheer her brother on at matches and cope in a high-achieving school, with the help of an assistant whom the Nevilles fund. “It is easier for her to concentrate because she isn’t tempted to run around all the time.”

A little girl has made a wobbly entrance into the room to ask when she and Harvey are going to visit the New Manchester Children’s Hospital (for which her parents have helped raise £20 million) to see some “sick” children. Although she walks with splints and goes out with a walking frame, she doesn’t include herself among them. At school sports day she came last in every race, and was upset when other children laughed as she fell over, but her parents would never pull her out of such activities.

Looking proudly at their daughter, the Nevilles challenge those who don’t understand the need for more and better staffed units for premature babies, whose numbers are growing every year as more babies are born to teenage and older mothers. “We were lucky, we had the best care. Others don’t,” says Phil, mindful that only 35 hospitals provide the one-to-one care set as the minimum standard in 2001 – a level at which infant mortality drops by 48 per cent. “Who is to say that a baby like our Isabella doesn’t deserve a chance?”

to donate to Bliss, or any other of the Telegraph’s four Christmas charities please call 0870 043 3759, visit telegraph.co.uk/charity

If you’ve just welcomed a premature baby into your life and are looking for a unique present please visit Prem2Pram our premature baby clothes are lovingly hand made in the UK to fit babies from 1lb upwards.

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