“Parents Often Feel Helpless”
An interview with Silke Mader, President of the German Federal Association for Preterm Infants and the European Foundation for the Care of Newborn Infants (EFCNI).
Hospital staff members know what to do when an infant is born prematurely. But how do the child’s parents react?
Silke Mader: It’s a tremendously dramatic situation for the parents, and it’s very hard to prepare for it. A pregnant woman who unexpectedly develops toxemia simply hasn’t taken into account the possibility of giving birth weeks before the planned delivery date. The parents may not even have had a chance to think about a name for the baby. And most of the women who know on principle that they’re at higher risk, for example if they are expecting multiple births, also react just like the others, with a very emotional mixture of shock, grief and guilt. There’s also fear that the child might not survive, and if its life does go on there’s the question of how. The parents suddenly feel very much alone, helpless and fairly overtaxed.
It’s certainly very important to offer them empathic care, isn’t it?
Silke Mader: Yes it is, not only to reassure the parents that their vulnerable little ones are in good hands, but also, and above all, to help them develop a close relationship with their child as soon as possible. Many parents are ashamed. Unfortunately, people’s expectations regarding their own child’s appearance run along the lines of a plump, rosy three-month-old baby. Instead, these parents see a wrinkled little newborn lying between machines and connected up with various cables, weighing 1,000 grams and with skin so thin you can see its organs shimmering through it. But if the nurses let the parents hold the child close to their hearts early on and encourage them to help, the parents soon come to believe their child is the world’s most beautiful baby. It would be desirable for the doctors and the hospital staff to strengthen the parents’ confidence that they can manage. But it’s also very important for staff to always take time to communicate with the parents sensitively if things don’t look good for the baby. For example, parents don’t want to be asked in the morning whether they want their child to be baptized immediately because it probably won’t survive the day.
How do parents feel about the medical equipment surrounding their child?
Silke Mader: They feel very ambivalent. The equipment gives them a sense of security, but it frightens them at the same time. Initially they think they can’t see their child through all the technology, but then they get used to it and want to know exactly what each device is doing. It’s probably more important for the parents than for the child to have the incubator look rather comfortable and personal and to have nice-looking positioning aids. These things can help reduce the parents’ sense of separation from the child behind the glass wall. For many families it’s also difficult to make the transition from hospital to home. At that point it’s the absence of monitoring technology that causes fear. The anxious parents then wonder who’s going to take care of their baby. Many of them are very afraid of taking the baby home. In such cases it helps to be able to spend a few days alone with the child in the clinic as a kind of test. It’s like being in a hotel room, but the neonatology ward is still within reach.
But the situation at home is probably not easy for these parents.
Silke Mader: The new everyday routine is very stressful for the whole family, and it often remains so for years. That’s why it’s good for parents to share their anxieties with others in self-help groups or to find out how other parents solve certain problems and what follow-up therapies they can recommend. They often make long-lasting friendships. I would also recommend that all parents visit our website at www.fruehgeborene.de and www.efcni.org, where we’ve put together a great deal of useful information. For example, here parents can find out where to find appropriate treatment centres or what kind of assistance they can request to relieve the burden on the family, or they can keep abreast of the latest research.
The interview was conducted by Dr. Sabine Wienand.
