hidden toll of being a premature baby
Modern medicine helped them defy the odds. But as the first generation of ultra-premature babies grow up, their struggles are far from over . . .
All her life, Naomi Gill has felt like she’s been playing catch-up. It’s a game she’s proved to be very good at. She was born weighing just 2 lb 1oz at 25 weeks in 1995, which, back then, was on the edge of viability, and was slow to crawl, to stand and to walk.
But, despite struggling academically throughout school (she was diagnosed as severely dyslexic as a teen), Naomi’s determination and personality should see her graduate from the University of Gloucestershire with a degree in performing arts this summer. And like any 21-year-old, she is full of optimism and ambition.
Naomi belongs to the first generation of extremely premature babies to reach adulthood. A generation dubbed the ‘sugar bag babies’ because they weighed less than the average bag of sugar at birth.
Back in the Nineties, they were at the forefront of neonatal medicine. Today, medical advances mean premature babies can survive from as early as 22 weeks.
But it’s only now that the first of these medical marvels have reached adulthood that the long-term impact of such extreme prematurity is becoming apparent — and it goes way beyond the physical.
To look at, there is very little to differentiate Naomi from contemporaries born at full-term. Although tiny at primary school, she’s now 5ft 3in, an average height. Similarly, despite having just 50 per cent lung function, the sole medical problem this has caused is asthma, which she controls using an inhaler.
But recently, Naomi has started suffering from anxiety, for which she’s been having cognitive behavioural therapy and taking antidepressants. And she has long noticed an unusual sensitivity to pain.
‘I was a drama queen when I was younger,’ she says. ‘When I wasn’t feeling well, I would make a big deal of it; if I had a stomach ache, it really hurt.’
Now, medics involved in a landmark British study — of which Naomi is part — are researching the long-term impact of spending your earliest days in an incubator rather than in the womb. And this, they now believe, could include a psychological, as well as physical, legacy.
‘There were very few survivors at very low gestations before the Nineties,’ says neonatologist Professor Neil Marlow of University College london, one of the directors of the study, which is following the progress of 314 babies born in the UK at 26 weeks’ gestation or less between March and December 1995. ‘It’s only now that we can actually get the first adult inklings of outcomes.’
BABIeS as young as 26 weeks started to survive in the early eighties when neonatal units introduced ventilation machines, but, says Professor Marlow, few made it. Newborns weren’t offered care if they weighed under 1kg, or 2.2lb (today the usual cut-off point is 500g) and ventilators in those days were, in Dr Marlow’s words, ‘awful’.
everything changed in the early Nineties with the introduction of better ventilation, antenatal steroids — which help mature unborn babies’ lungs — and artificial surfactant, a synthetic form of a crucial substance lacking in premature lungs, which can be given to babies after birth.
All these techniques help minuscule babies to breathe.
But what doctors are only just starting to understand are the smaller but still significant repercussions of neonatal care.
‘In the uterus there isn’t a lot of sensory stimulus,’ explains Dr Judith Meek, a consultant neonatologist at the University College london Hospital who works closely with Professor Marlow. ‘We now know that over-stimulating immature babies in the brightly lit, noisy, busy neonatal intensive care unit could well change their neurological development.’
Meanwhile, it’s now believed that overhandling premature babies could affect the central nervous system.
When Naomi was born unexpectedly early at 25 weeks, her mother Mel, now a 54-year-old university tutor in education from Uckfield, east Sussex, was told the chances of survival were slim.
Naomi at birth was no bigger than the palm of her father’s hand. ‘It was awful,’ says Mel. ‘We couldn’t hold her until she
was a week old — bonding with your baby isn’t really possible in that environment.’
For the first three months, Naomi was in an incubator, couldn’t breathe without machines and was fed through a tube. While she has no recollection of this, when she was asked as part of the study to do a breathing test to assess her lung function, she burst into tears.
‘When I saw the tubes I freaked out,’ says Naomi. ‘I thought it was like a feeding tube that would go up my nose and down my throat.’
Doctors were quick to stress that even if Naomi did live, she would probably be deaf, blind or have significant learning disabilities. As it turned out, Naomi has confounded expectations, but her mother says there have been significant challenges along the way.
In her teens, Naomi was diagnosed with dyslexia, short-term memory and processing difficulties. Today, she struggles to memorise lines and dance routines for plays, and learning to drive was tough in terms of both memory and spatial awareness — although, says Mel, ‘she’s so determined she passed first time’.
The challenges the Gills have faced are typical. A 2012 World Health Organisation report includes a list of long-term problems which range from physical effects such as chronic lung disease and cardiovascular ill-health to neuro-developmental and behavioural issues.
Other classic traits, says Dr Judith Meek, often include a slight clumsiness, and being over or under sensitive to sensations including touch, pain and hearing.
Neonatal occupational therapist Emily Hills, who practises at London’s Royal Free Hospital, believes that cases of poor attention spans, behavioural difficulties, autism and learning difficulties are increasing because we’re keeping babies alive younger.
She’s noticed that ‘the younger the gestational age, the higher the prevalence of difficulties with motor skills, cognition, play and language’.
She adds: ‘It is very naive to think the mismatch in sensory environments [between normal development for a baby in the womb and the experience of a baby in a neonatal unit] will not impact on development.
‘The neonatal unit has a longlasting impact on the entire family — the prevalence of acute stress disorder and post-traumatic disorder is high for both parents and children.’
Zoe North from Morden, Surrey, is another sugar bag baby now coming of age. When she was born at 26 weeks she was, her mother Caroline recalls, ‘the size of my husband’s watch’.
Caroline, now 50, says: ‘I was taken aback by the neonatal unit experience — the machines, the existence of life and death in one room. I didn’t think this tiny person with thin skin would stand a chance.’
Eighteen years on, she says, Zoe ‘remains a miracle’. She progressed well and was sent home before her due date with a clean bill of health. But as the months passed, Caroline noticed one of Zoe’s legs didn’t reach the end of her sleepsuit, and when Zoe wasn’t walking by 18 months, she started to worry.
Finally, the day before Zoe’s second birthday, they were told she had cerebral palsy as a result of being starved of oxygen for three seconds after her birth, and that she would be unlikely to walk, talk or be independent.
Again, Zoe defied expectations. She learned to walk around the primary school classroom by pushing a buggy. Today Zoe is in her last year at a mainstream school, does public speaking on disability rights and is also running this year’s London Marathon for medical research charity Sparks.
She has worked hard to overcome mild learning and attention difficulties, and says: ‘I had to fight to be born, to breathe, to talk. I’m not going to get an easy pathway through life.’
Neonatologists have a growing understanding of the emotional and sensory trauma experienced by premature babies. Even nutrition has an impact — research found that IQ and learning difficulties are affected by the levels of nutrients a premature baby receives in the first days of life.
‘There have been changes finessing the quality of care,’ says Dr Meek. ‘We put babies through an awful lot and we should get better at what we do.’
NOW 20, Martina Barber from Stevenage, Hertfordshire, was given ten minutes to live when she was born at 25 weeks. She was starved of oxygen at birth, and has grown up with a learning disability.
But she has become a champion heptathlete, an ambassador for the UK Sports Association and hopes to compete in this year’s Paralympics.
Her mother, Alison, sent her to a mainstream primary school but says: ‘Martina wasn’t happy and I had to get her into a senior school for children with learning difficulties. It’s been hard, but I’m very proud she’s doing more than I expected.’
Professor Marlow hopes to continue following the babies in his study into the next decade — and beyond. ‘We’ve shown that for a lot of children who had difficult neonatal periods, that’s the only problem they have. For others there is more of a problem and it’s difficult to predict what’s going to happen next.’
But thanks to these pioneering young people, today’s premature babies have an even better chance of survival.