Managing pregnancy and childbirth with EB

Could my child be born with EB?

If you have a dominant form of EB, where a single copy of the gene is inherited from one parent and the copy of the same gene from the other parent is normal, there is up to a 50% chance that your child will have EB.

With dominant forms of EB, the parent carrying the gene is usually affected themselves and so will likely already know that they have EB.

Recessive forms of EB are where two copies of the same gene are inherited – one from each parent. The birth of a child with the recessive form is usually totally unexpected since both parents can carry the EB gene without displaying the condition themselves. The chance of developing recessive EB is lower at 25% but recessive forms of EB are usually more severe.
If you have a family history of EB, you can request a genetic test, which is also sometimes called a genomic test. This will help you to understand whether EB could affect your child which could influence your decision about whether to have children or not.

A genetic counsellor can offer genetic counselling for EB families. This helps families understand the risks and benefits of having a genetic test, the potential results of the test and what they mean, and how family members may be affected.

For more information about genetic testing or to request one, please contact your EB healthcare specialist or see the NHS’s information on genetic and genomic testing.

EB pregnancy and childbirth healthcare support and guidance

The care and management you will need during pregnancy and childbirth will vary depending on what type of EB you have and how it affects you.

Specialist advice and support, for both you and the non-EB specialist healthcare professionals that will be looking after you during your pregnancy is available from the EB specialist healthcare teams, therefore we would recommend that you contact your EB specialist healthcare team if you are planning to or are already pregnant.

If you are not currently under the care of an EB specialist healthcare team, then you will need to ask your GP for a referral. Please note this referral is free, there is no cost for your GP.

To find the details of your local GP, please visit the NHS website by clicking the button below.

Find a GP

You can also contact the DEBRA EB Community Support Team for guidance and support.

EB patient support guides

DEBRA International, the worldwide network of national groups working on behalf of all people living with EB, offer many useful clinical practice guidelines, which will provide guidance throughout your EB journey.

Specific guidelines related to pregnancy, childbirth, and aftercare

Other EB patient guides

Links to other support during pregnancy and childbirth

There are many organisations that can offer support during pregnancy and childbirth on a range of topics. Please find links below to organisations that may be able to support you: