There are only a few places where a new start and the end are so close together as in the premature neonatal unit. Professor of neonatology Irwin Reiss is head of Neonatology at Sophia Children’s Hospital, part of Erasmus MC. Reiss talks about opportunities, frustration and the rituals of saying goodbye.

New start

It’s quiet in the Neonatal Unit. The nursing staff and doctors are working calmly behind their screens. The monitors show the vital functions of each patient. The three rooms can accommodate over thirty babies. The premature babies are in incubators, sometimes open, but often covered to keep out light and sound. Carers talk very little or softly when they are near the patient. Too many stimuli are bad for the development of the babies’ still immature brains, explains the head of the Neonatal Unit, Irwin Reiss, during a short tour. “The current trend in treatment is minimal intervention, because every intervention can cause harm.”

Reiss has worked as a paediatric intensivist and neonatologist at Sophia Children’s Hospital for over ten years. “You must always believe in your patient. That’s why I always try and give a patient a chance, in consultation with the parents of course. The bottom line here is quality of life. In the Netherlands, the borderline of viability for treating premature babies is 24 weeks of gestation. In the future, I expect we will need to discuss this borderline, particularly as younger babies are being treated in neighbouring countries.”

Parents may stay with their baby in the unit. Physical contact is important; skin-to-skin contact has been proven to be good for premature babies. Parents hold their children kangaroo style, however tiny they are. The parent lies in a comfortable armchair behind closed curtains and the baby, tubes and all, is laid on the bare chest of the mother or father. The parent can look at the baby’s face using a hand mirror. If possible, the baby is given breast milk, although this is demanding on the mother, who has to express milk several times a day.

‘Of course the baby starts with a 2-0 deficit, but we give it a chance’

Irwin Reiss

Reiss: “Initially, you must always be positive. Of course the baby starts with a 2-0 deficit, but we give it a chance. It’s important for us to continually involve the parents in decisions regarding the treatment. Move forwards, step by step. Let’s start by getting through the first hours, the first days, the first weeks. Keep setting new milestones,” Reiss describes the long journey that these parents of premature babies have to take. But he also sees results: “It gives me a boost to see these children again at the age of five or eight, when they come for a check-up. The start may have been difficult, but although there are obviously problems and setbacks, things can turn out well.”

Saying goodbye

But sometimes, things don’t turn out so well. Between 5 and 10 per cent of premature babies die.

“Sometimes, they suddenly slip away. You try to locate the parents. At such times, you do absolutely everything you can to keep the baby alive until the parents get there,” says Reiss.

But more often than not, there is a longer period in which you can see death approaching. “However tiny the baby is, you can see when it’s suffering. At that point, the team meets, initially just the members. You go through the protocols, follow the checklists to prevent things becoming too emotional. We always strive to achieve consensus. If one colleague sees a possibility, we discuss it again before taking a decision.”

‘Death doesn’t need to be rushed’

Irwin Reiss

They also involve parents right from the start in all decision-making relating to treatment, taking all the time they need. “Death doesn’t need to be rushed,” says Reiss.

“Of course, parents don’t always agree with stopping treatment. That’s when I try to involve them in the decision-making. I explain what the child’s life will be like if we continue the treatment. If they will suffer serious problems, physical and mental, you have to consider their future quality of life. The most important message is: the child must not suffer.”

And suffering doesn’t discriminate. Over the years, Reiss has had seen parents from all cultural backgrounds and religions. “Some parents don’t want to accept that their child has no chance of survival or won’t have any quality of life. In such cases, I always take a step back and give the parents the space they need. But usually it isn’t that complex and the outcome is clear and inevitable. And when parents can’t decide, you often find that it’s the child that decides, and dies.”

When death becomes inevitable, agreements are made as to when treatment will be stopped. The baby dies in a separate room. “In principle, anyone may be present. Usually, it’s just the parents with the baby, but sometimes they’re afraid to be alone and a member of the nursing staff stays with them. The child is put on the parent’s lap and the ventilator is switched off. All the tubes are removed, after which the baby dies. Parents may help wash and dress the baby. And if they want, photos are taken by the ‘Make a Memory’ foundation. Members of this foundation are professional photographers who take photos of ill and dead children on a voluntary basis. Beautiful photos. Then a plaster cast is made of the foot, also as a memory. Then the baby goes home with the parents. In the Maxi Cosi.”

Reiss has a special memory of a recent death. “A baby with severe brain damage eventually died at home. The doctor made the arrangements; the parents had already lost a child and this was the only thing we could do for them. I went with them. It was amazing: the whole family was in the house, and while the grandmother and I were playing with toy cars with another child in the kitchen, the baby died in the bedroom. Parents are often afraid when their baby dies: what will it look like? I can then tell them that they always look very peaceful, with no tubes or stickers and free from suffering. Death can be a serene moment. And if everyone is happy at how everything went, as a doctor you can be hugely grateful.”

Besides being grateful, Reiss also experiences difficult moments. For that reason, he generally doesn’t attend the biannual memorial sessions that the Sophia organises for relatives of children who died in the hospital. “I know that it’s important, but it’s all very close to you. Nearly half of the babies die from an infection, not immaturity. Sometimes you do everything, and you lose a child to an infection. That’s frustrating, and you’re left with the sense that you’ve failed.”