The baby

It’s easy to describe any baby as a miracle baby: they’re all miracles to their parents. But some children have earned that description more than others. Lei De Wet is one of them.

Next time you open a can of soup or a tin of tomatoes, hold the tin in the palm of your hand for a few moments. That’s how much – or little to be more accurate – Lei weighed when she was born: a mere 400 grams. To put that figure into perspective you have to know that the average weight for a full-term baby is 3,5 kilos.

If Lei had been born 10 years ago there’s little chance her parents would have celebrated her third birthday as they did in May this year. Lei simply wouldn’t have lived to celebrate it. For Lei was born at 26 weeks’ gestation, 14 weeks’ premature and less than one-eighth the weight of an average full-term baby.

Had her father, Lindsay, 31, been able to hold her at the time, she would have fitted neatly into his hand. Now, only photographs taken in those first days – one of her lying alongside a ballpoint pen, another next to his hand – or the imprint of her 3cm foot give any idea of just how tiny she was.

Yet Lei survived and, more importantly, she is thriving. As far as doctors can tell, there’s nothing wrong with her physically or developmentally. I first met Lei two years ago when, inevitably, she was small but the only obvious sign of her prematurity was a squint. Doctors had told her parents it was easily correctible. I met her again a few days ago. Her progress blew me away.

The squint, as predicted, was gone, corrected with laser surgery when Lei was two. She is thin and fine boned but is as tall and as sassy as any three-year-old. She is pretty, outgoing and would certainly give my three-year-old daughter a run for her money.

“She is such a normal girl that I was telling my friends the other day that I have to remind myself that she was born under such special circumstances,” says her mother, Sian, 30, at their Cape Town home. “She’s done a lot better than could have been expected. She is a very confident child and is completely in control of her crêche. She’s a born manipulator; a real girl. Her favourite thing is to go to the shops, especially to look at shoes.”

Lei now needs to visit her paediatrician, Dr Allan Puterman at Cape Town’s Kingsbury Hospital, only once a year for a check on her progress. Dr Puterman is the first to say how amazing Lei’s progress has been. “So far we can see nothing wrong with her,” he says. “Her schooling will be critical. It will be then that we will be able to see how her development progresses but there is no reason to expect problems.”

There are, says Dr Puterman, only a dozen or so babies worldwide who have survived being born at such a low weight. The smallest surviving baby weighed just 283 grams. But what sets Lei apart from some of those babies is her progress and development. So how did Lei survive? What happens when a baby is born so very, very early?

The birth

Sian was admitted to hospital when it was diagnosed that her blood pressure was high, her placenta wasn’t working and the baby appeared to have stopped growing. She was given antenatal steroids on the Friday and Lei was born by Caesarean section two days later.

Lei immediately received a lung-maturing medication, surfactant, was supported by a ventilator and drips, and was closely monitored in the neonatal intensive care unit (NICU) at Kingsbury Hospital.

“I was shocked to see how small she was,” says Sian. “I could put my ring on her arm right up to her shoulder and there was still space around it. That first week, her paediatrician wasn’t optimistic but he wasn’t pessimistic either. He was very realistic.

“Then, from the end of the second week his mood started to pick up because he thought she was going to make it. The paediatrician was very fond of saying there is no manual because she was such a small baby. We didn’t know what was normal, what wasn’t; what was uphill, what was down. I can’t tell you went through my head. All I can tell you is I knew she was going to make it.”

Dr Puterman explains, “There were multiple problems but Lei responded to all of them. If your lungs aren’t matured then the heart, the brain and the kidneys have no chance of maturing. If you get your lungs matured quickly then a lot of the heart, brain and lung complications fall away. Her lungs matured quickly but she still developed a heart complication. Fortunately, it responded to medication so we didn’t need to do surgery for that.”

After a while Lei started to tolerate feeds. “I try to get the babies of this size and gestation onto breast milk within three or four days of delivery, even if it is just a drop every three or four hours. It’s partly for nutrition but partly because breast milk helps the gut to mature quicker.”

It was a long three months, during which Sian and Lindsay kept an almost round-the-clock vigil at Lei’s bedside, but just a few weeks short of her original due date, weighing 1,8 kilograms, Lei went home.

The facts

Full-term pregnancy is 40 weeks and any birth under 37 weeks’ gestation is considered premature. Lei was born at 26 weeks and, at 400 grams, is believed to be the smallest baby by weight for gestation to have survived premature birth in South Africa.

Ten years ago, 28 weeks was the cut-off date at which Lei’s parents might reasonably have expected her to survive. The medical technology and professional care needed to keep Lei alive then was not available. But today, she is not alone. Approximately one in 10 babies is born early and she is among an increasing number of “preemies” born here and worldwide – a very few as young as 23 weeks – who are surviving against what seem to be the most unlikely of odds.

Medical advances have been so profound that, in the private sector at least, sending home healthy, bouncey babies born at 28 weeks is almost routine. Indeed, the survival statistics are staggering. More than 90 per cent of premature infants who weigh one kilogram or more at birth survive. Like Lei, even infants born at around 25 to 26 weeks’ gestation weighing as little as 500 to 800 grams have a relatively good chance of survival, even though they are at greater risk of complications, including respiratory problems, heart defects, blindness and brain damage.

The Vermont Oxford Network (VON) is a non-profit voluntary collaboration of healthcare professionals worldwide who are dedicated to improving the quality and safety of medical care for high-risk newborn infants and their families. One of its roles is collating statistics on the outcomes of premature babies.

In the past two years, more than 30 hospitals in South Africa with NICUs have become affiliated to the Network. Says Dr Puterman, who is secretary of the South African arm of the organisation, “From the database, we can see that NICUs in South Africa are doing as well and better than those around the world. We are doing very well indeed.”

But, and it’s the million-dollar question, which babies survive and which don’t? And what determines the final outcome for a premature baby?

“There’s no doubt the child itself does,” says Dr Puterman. “There are some babies who are fighters and some who are not. Girls have a better outcome than boys but even then you get babies who have a will to live no matter what they go through.

“Lei gets a lot of the credit but it’s a team effort. As well as the medical knowledge and equipment you have to have properly trained nursing staff dedicated on a one-to-one basis. Although the statistics weren’t great for Lei, she had both of these. And then, of course, there’s modern techonology and care.”

The antenatal care

The improved obstetric care that mothers get before delivery is often what makes the difference between survival and not. “Gynaecologists can keep these babies in the womb until 28 weeks so that we only infrequently have a 500-grammer at 24 to 25 weeks to deal with,” says Dr Puterman.

“And even then they are able to prepare these babies for the most optimum of deliveries. In my experience over the past 19 years, the problem cases come with inexperienced antenatal care and when the baby is not prepared. In private hospitals, where mothers receive the best of antenatal care, we have the best prepared babies.”

If a doctor anticipates a premature delivery, the mother is given an antenatal steroid to help mature the baby’s lungs. Studies have shown that if there is time before the birth, giving the mother corticosteroids between 24 hours and seven days beforehand reduces the baby’s risk of respiratory distress – and death – by one third.

Developments in foetal monitoring mean that if a baby’s growth is being compromised, doctors can decide if the baby is safer in or out of the mother’s uterus and the ability to monitor uterine blood flow, which can become abnormal or reversed, also allows doctors this decision.

Other forms of obstetric intervention include being able to manage pre-eclampsia, a rapidly progressive condition characterised by high blood pressure and the presence of protein in the urine that affects at least five to eight per cent of all pregnancies and can be fatal to mother and baby, as well as other hypertensive disorders of pregnancy.
The reality is that the longer a baby stays developing in his or her mother’s uterus, the maturer the baby’s body and its functions get, most particularly the lungs, the digestive system and the nervous system, and the greater its chances of survival.

Once born, doctors and nurses have to do their best to recreate the conditions of the uterus, to recreate the physiology. The ability of the paediatrician and obstetrician to work closely together to get another few days or a week out of a pregnancy can mean the difference between life and death – or quality of life – of a baby.

The fact that Lei was 26 weeks’ gestation, even though she weighed so little, meant that her body was better able to cope outside of her mother’s uterus. As Dr Puterman says, a week or two at this stage of development makes a profound difference to a baby’s outcome.

The medical advances
There have been many medical advances in premature infant care but doctors agree, and studies prove, that the single most important one has been the development of surfactant medication. Administering surfactant immediately after birth helps mature the lungs of a premature baby, reducing the risk of respiratory distress syndrome (RDS) and weaning it off what can be invasive ventilators.

“Surfactant is like the oil that oils the lungs, which the very young babies do not make themselves and would on their own take a few weeks to make. By using it immediately, you mature the lungs and a baby who would normally be on a ventilator for two weeks comes off after 48 hours, reducing the risk of complications,” says Dr Puterman. In private hospitals, surfactant is now given automatically immeditely after birth to most premature babies.

Other advances include refinements in ventilation, including high frequency oscillatory ventilation (HFOV), which alternately subjects the lungs to positive and negative pressure at very fast rates. HFOV is usually used in infants with severe RDS, who have failed to respond to conventional ventilation and surfactant.

Continuous Positive Airway Pressure (CPAP) is a very different type of respiratory support because it doesn’t require a tube to be inserted into a baby’s windpipe. A CPAP machine gently blows oxygen/air into the baby’s lungs through prongs placed either in the baby’s nostrils or with a small mask. The CPAP ventilator supplies oxygen/air at a low pressure that keeps the baby’s lungs expanded and decreases the risks of lung damage to the baby. This type of ventilation is particularly suitable for babies who can breathe spontaneously but that need some support. CPAP is becoming the preferred method of ventilation in most cases.

The baby's chances

Of course, keeping babies alive is only half the battle and there are many complications that can arise from prematurity. Ultimately, whether a baby will survive and what the chances are of complications is still imtimately tied to his or her gestational age.

“Nowadays, with experience and ongoing research, 28 weekers aren’t much of a problem,” says paediatrician Dr Carl Wicht, of Vincent Pallotti Hospital in Cape Town. “There’s still a risk but now we take on 25 weekers. The other area is babies born at less than 25 weeks and that’s where the success is very, very poor. If babies do survive, there’s a very high morbidity.”

Results of a UK study showed that the long-term outcome of very, very premature babies, or “micro-preemies”, was considerably poorer than the often-printed success stories lead us to believe. The study looked at 308 six-year-old children who had survived very early prematurity between 23 and 25 weeks.

“It’s been able to put into perspective statistically things that we know happen,” says Dr Puterman. “They have found that in Britain, across the board, if you are born at 24 weeks, three out of 100 kids are completely normal. At 25 weeks, it goes up to eight out of 100 kids and, at 26 weeks, you’re looking at about 12 to 15 out of 100 kids who are completely normal.
“So, when you are faced with those figures, it’s very important to realise that things may not work out well.”

The statistics
One of the problems of prematurity is that it’s impossible to predict at birth what the outcome will be for any baby. Doctors can usually tell within the first few weeks whether a baby will survive if it doesn’t suffer common complications. But, as Dr Wicht says, successful outcomes depend on an individual NICU.

“In our situation, with our resources, expertise and nursing staff, if there are no major complications, it would be unethical not to attempt resuscitation from 25 weeks plus,” he says. Even so, he adds, it is essential with such young babies for the parents to talk with their medical team about the baby’s predicted quality of life.

“Certainly, most people would be against just lumping everyone into the ‘there’s-no-chance, let’s-just-leave-them’ category but if you go through all the correct procedures and get things going you also don’t necessarily have to commit yourself,” says Dr Puterman. “If you find that there’s bleeding and the lungs aren’t working and the kidneys aren’t working, it is possible to adjust one’s commitment as time goes on. From our side, where everything is fitting in, it is appropriate to give the baby a chance and see how it’s going.”

An NICU in a tertiary state hospital, such as Tygerberg Children’s Hospital, has all the high-tech facilities and treatment modalities available in the private sector, such as high frequency oscillation, surfactant, etc.
Unfortunately, in the state system, explains Professor Gert Kirsten, head of neonatology at Tygerberg Children’s Hospital, there is officially a one kilogram, 28-week gestation cut-off guideline for admission to an NICU for ventilation.

“These guidelines were necessary because of limited tertiary facilities in state hospitals and the very high, very low birth weight rate in South Africa. They were decided on by the neonatologists from the different medical schools and were based on the fact that the survival over 28 weeks’ gestation is so much better than under 28 weeks,” says Professor Kirsten.

Professor Kirsten emphasises that these admission criteria do not mean that babies born under 28 weeks or who weigh less than one kilogram are left to die. The infants at Tygerberg Children’s Hospital that do not qualify for admission to an NICU for ventilation are admitted to the high-care level 2 neonatal ward where they receive nasal CPAP, breast milk and kangaroo mother care.

Due to the limited NICU beds, many babies over 1000 grams are also treated in the level 2 high-care ward. This has resulted in a survival rate of 97 per cent for inborn babies over one kilogram who are not ventilated but are treated with nasal CPAP. For those between 800 and 1000 grams, the survival rate is 74 per cent.

These results confirm the importance of good antenatal care combined with non-invasive ventilatory support (nasal CPAP), breast milk and kangaroo mother care especially where facilities are limited, says Professor Kirsten. “Despite restrictions imposed by financial constraints and staff shortages, innovative and cost-saving treatment modalities mean that babies with birth weights less than 800 grams can be treated effectively in state hospital,” says Professor Kirsten.

The worst outcomes are found in babies with birth weights below 1000 grams who were not born in a hospital with high-care facilities, or whose mothers did not attend an antenatal clinic or who did not receive antenatal steroids. “If we can get all pregnant women to attend antenatal clinics from early pregnancy then it will have a major impact on neonatal outcome,” says Professor Kirsten.

Having a premature baby is a life journey that no parent would choose. But, as Sian De Wet says, “When you see your little baby, you want the doctors to do everything they can for her. Nothing else is an option.”