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Antenatal care

The so-called booking visit is the first visit to the antenatal team who will care for you during your pregnancy. It may be helpful to have EB-specific information with you. This also applies to men with EB whose partners are pregnant. A lot of anxiety can be caused when health professionals are not aware of the facts about EB, and it is seldom the case that health professionals will have seen EB before. This is particularly so with regard to information about genetic risks and it is helpful to all concerned to have clear information from the beginning.

It is important to inform your obstetric team from the beginning about your skin fragility and things that are likely to cause you problems. In the context of antenatal care this may include:

  1. Taking of blood pressure: You may need padding between the blood pressure cuff and your skin in order that this very important test is carried out.
  2. Abdominal palpation in order to assess the growth of the baby is carried out routinely at many of your antenatal visits. Ask the midwife or obstetrician to be very gentle to avoid blistering your abdomen.
  3. Ultrasound in pregnancy should not cause a problem provided the probe is well lubricated and the scan is carried out gently.
  4. Vaginal examinations are carried out in pregnancy and during labour. You should alert the person doing it to your need for extra care and ask them to lubricate their gloves very well. Blistering of the groin and perineal area may be a problem particularly in women with the inversa form of DEB (in which the body extremities, i.e. limbs tend to be unaffected, whilst areas such as the groin and the lining of the oesophagus can be particularly badly affected). In the context of obstetric care you should warn the health care professional of this problem and ask them to be extremely careful.
  5. Taking of blood: This should be done with care and a gentle pair of hands may be preferable to the use of a tourniquet. Spirit swabs are sometimes used prior to the taking of blood; if this is the case ask the phlebotomist to swab the skin with care. Elastoplasts are often applied after blood taking so warn the phlebotomist beforehand that you cannot use plasters.
  6. Urinanalysis is performed routinely during antenatal care. If you have fragility of the genital region, occasional false positives for blood may occur. The obstetric team should be made aware that this is a possibility. Occasionally people with EB do have some fragility of the urinary tract with consequent bleeding. If this is a problem for you, please mention it to your obstetric team.
  7. If you suffer with wound infections, particularly in the genital region if you are planning a normal delivery, or in the abdominal region if you are having a caesarean section, you should ask for wound swabs to be taken and an appropriate antibiotic given. Topical treatments may also be helpful. If you have wound infections of your hands it is important to clear these up before your baby arrives to ensure they are not exposed to any unnecessary risks.

If at any stage you are concerned about information being given with regard to EB, do contact an EB specialist for clarification (seee EB-CLINET to find local or national EB specialists).

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