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Info Centre - Having a premature baby

From the moment you know you are pregnant, your whole life is geared around the 40-week date when your son or daughter is scheduled to put in an appearance. But what happens if your baby is in a hurry to be born; if he arrives weeks or even months early and you are plunged into the kind of parenthood that is a long way from what you’d imagined?

To make matters worse, you may be coping with a life-threatening illness, serious blood loss or the aftermath of an emergency caesarean and, because cots in neonatal units are limited, you could find your baby isn’t even in the same hospital as you. Although you may be well enough to be able to go home, your baby may be in hospital for some time.

How does it feel as a parent?

Having a baby prematurely not only robs you of the expectation of a term birth, the experience of caring for your baby is very different as well.

When a baby is born too early attentions naturally focus on the needs of the infant. But what of the parents? With their child in neonatal care, perhaps in an incubator they may feel like mere spectators as health professionals go about their work.

Although in many neonatal units staff encourage parents to do as much as they can, you can’t just pick up and cuddle a baby who is in an incubator, covered in tubes and wires. It is easy to feel that your baby needs the doctors and nurses more than he needs you.

Little progress in care for parents

The care offered to babies in neonatal units in the UK is of an extraordinarily high standard. But how much progress has there been in understanding the experience of parenting a premature baby? Lesley Taylor, one of the NCT’s UK special interest coordinators on prematurity had three premature babies in the early 1980s. She thinks little has changed. Parents are, she says, still reporting the same kind of problems of poor communication and a lack of consideration.

Dr Joanna Hawthorne, who has been involved in neonatal care as a psychologist since the 1970s, agrees that the special difficulties and feelings of parents of premature babies need to be recognised.

"For three years I ran a support group for parents of premature babies and I still provide support to individual parents who have had experience of neonatal care. Talking with families about their experiences, I have come to realise that a big problem is that often these parents do not feel valued as parents, with a role and needs of their own.

Nicola Jones adds: "My own experience also illustrates this. My first child, Charlie, was born in the year 2000 by emergency caesarean section at 32 weeks, weighing 2lbs 12oz. During my three weeks as an in-patient before his birth I experienced the very best in terms of care and understanding. However, once I had been discharged, leaving Charlie in neonatal care, no health professional was responsible for my welfare until I brought Charlie home.

"My friend, Helen May’s daughter, Hannah, was born at 24 weeks at her local hospital weighing only 1lb 8oz. Within three hours of the birth, Hannah was transferred to a bigger neonatal unit some miles away. Helen had to make her own way there to be with her daughter – and when she did arrive, they were only able to let her stay for a single night."

It is vital that healthcare professionals understand the needs of parents who have a premature baby so that they can improve the facilities and support provided. The National Service Framework for England published in 2004, provided new opportunities for achieving change, highlighting the need for specialist services for women with complex pregnancies; individualised care for vulnerable and disadvantaged women; involvement of fathers; and particular support to establish breastfeeding for mothers who have a premature or sick baby.

The NCT has been working with researchers from Warwick University and Oxford University and with the charity, BLISS, to set out a model of family-centred care for parents of premature babies, based on the findings of POPPY, a three-year research project available at www.poppy-project.org.uk.

In summary, we see family-centred care in neonatal units as involving a combination of:

  • a philosophy of care that emphasises partnership working and shared decision making;
  • a range of policies to help ensure that information, support and parents’ sense of involvement in their baby’s care is of a consistently high quality; and
  • a range of organisational features and facilities to welcome parents, respond to their needs and build their confidence.

 


Good news

The NCT has developed information for parents of premature babies (see above, as well as additional resources at the bottom of the page) as well as an eGroup for parents of premature babies. In some parts of the country – Central Warwickshire for example – there are NCT support groups available: call the NCT enquiries line on 0300 330 0770 for more information. And, of course, there is the NCT Experience Register where you can find people to talk to who know exactly what you are going through because they’ve experienced it themselves.

We want every mum and dad of a premature baby to get a consistently high standards of support and consideration for their needs as parents, as well as the excellent medical care their babies receive already.

Visit the NCT eGroup for parents of premature babies at: nct-preterm@yahoogroups.com or the POPPY website http://www.poppy-project.org.uk/ You can contact the BLISS Parent support helpline on Freephone 0500 618140. Lines are open Monday to Friday 10am-5pm.

If you would like to speak to someone on the NCT’s Experience Register, please contact your local NCT branch, or call the Enquiry Team at the NCT’s UK Office on 0300 330 0770.

Page lasted updated 2010.