CDH UK - The CDH support charity

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What to expect during your pregnancy

Throughout your pregnancy you can expect to be more closely monitored. Some of the things you can expect are:

  • Extra ante-natal appointments to closely monitor the pregnancy and the baby. This may involve a referral to a local Fetal Medicine unit.
  • MRI (Magnetic Resonance Imaging) to attempt to obtain the size and volume of the baby’s lungs, which may provide the Doctors with additional information to prepare for the baby’s arrival.
  • Amniocentesis to check for chromosomal abnormalities, because rarely CDH is associated with other syndromes. It is entirely your choice whether you opt for this test, and if you feel you do not want to have this procedure carried out discuss this with your Doctor.
  • A referral to a tertiary centre, which is a specialist centre within a hospital that has the experience to look after your baby during your pregnancy and after he or she is born. Whilst your local hospital will try to ensure that the hospital they refer you to is as close to where you live as possible, it is not always the case and can sometimes mean you may have long distances to travel.
  • The opportunity to meet with the medical team who will be caring for you and baby during and after the birth. This may include a neonatologist (newborn baby doctor), Paediatrician (doctor who specialises in caring for babies and children), a paediatric Surgeon (a doctor who specialises in carrying out surgery on babies and children), a consultant Radiologist (a Doctor specialising in x-raying, scanning and MRI scanning) and a Fetal medicine specialist (a doctor who specialises in caring for unborn babies and pregnant women).
  • You may also be given the opportunity to have a look around the neo-natal intensive care unit (NICU) so that you know what to expect when baby arrives.
  • If the centre you are referred to has trained counsellors, you may be offered a counselling service. If in doubt ask the Doctor responsible for managing your care.

Please be aware that not all of the above may apply to your individual care plan.

Your pregnancy should progress normally from a physical and general health point of view. You may however, develop Polyhydramnios during the pregnancy, which is an increase in amniotic fluid surrounding the baby. This will be monitored by the person carrying out your scans and the person responsible for looking after you throughout your pregnancy, such as a consultant obstetrician or Fetal medicine specialist. If the fluid increases too much and you feel uncomfortable, or the doctor feels it necessary, the excess fluid will be drained from around the baby. This is carried out by local anaesthetic and whilst it may be uncomfortable, it should not be painful and your Doctor will explain the procedure fully in advance.

An experimental procedure called FETO (Fetal Endoscopic Trachael Occlusion) may be offered in some cases of CDH. This involves the placement of a balloon into the baby’s trachea to attempt to improve the development of the lungs whilst the baby is growing in the womb. FETO is classed as a minimally invasive procedure carried out by a specialist medical team, but is not without risk. The procedure is currently only carried out at one UK hospital for severe CDH cases and there is no firm evidence to show that this is successful in reducing mortality rates in infants, however, it is shown to have had some success in certain cases. There is a certain criteria required for this procedure and your Doctor can explain what this is.