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Pregnancy and childbirth in EB

All potential parents considering a pregnancy have both hopes and anxieties. For those with EB there may be many questions both about the health of any future children, and also for women anxieties about the effect of any pregnancy on their own health both during pregnancy and at delivery.

The years of child rearing that follow should also not be overlooked. It is the aim of this section to answer some of the questions that arise, and the information given is based upon experience gained in working with parents who have EB. Additional information has been taken from articles written by teams caring for people with EB throughout the world.

Who is this section intended for?

This information is directed primarily to those people with either DEB, or non-Herlitz JEB who are either considering a pregnancy or are already pregnant. Some people with the more generalised forms of EBS may also find the advice on skin management useful.

Specific notes for health care professionals are available as a separate leaflet entitled 'EB and Pregnancy - A guide for Health Care Professionals'. This can be obtained at the DEBRA UK office.

In no way is this information is intended to be a substitute for professional obstetric advice given by your GP, obstetrician and midwife. It does, however, hope to complement this advice by giving information tailored to the needs of those with EB.

Sources of information:

Liz Pillay, Senior EB Nurse Specialist, DEBRA UK
Jackie Hitchen, Senior EB Nurse Specialist, DEBRA UK
Jennie Hon, EB Nurse Specialist, DEBRA UK
Pauline Graham-King, EB Nurse Specialist, DEBRA UK

With grateful thanks to those people with EB who have shared their experiences of pregnancy and childbirth with the nursing team.

We have no commercial interest in promoting specific products. These have all proved to be useful and well-accepted for people with EB.