Your unborn baby has been diagnosed with a heart problem Your unborn baby has been diagnosed with a heart problem. As parents, this news will have been shocking and frightening. The aim of this leaflet is to give you information to help you understand what will happen between diagnosis and birth. Explanation of your baby’s heart problem: At diagnosis, the doctor (fetal cardiologist) will have explained your baby’s heart condition. You may have been given a drawing to show you the normal circulation of the heart, and drawings of your baby’s heart. Your fetal cardiologist will have explained to you about your baby’s heart, and what this heart condition may mean for your baby once the child is born. Your doctor may also mention further investigations such as an amniocentesis and the choice of not continuing with the pregnancy. Both of these would need a more detailed discussion with your obstetrician ( ideally you should be contacted or seen within 3 working days). You will have been given a pack of information which contains: Contact numbers so that you can contact the team if you have questions Information booklets/ leaflets which explain your child’s heart condition Bristol Royal Children’s Hospital booklets, which will give you information about the different wards your baby may visit while in hospital, and information about treatment for your baby’s heart condition ( if being delivered at St Michael’s Hospital, Bristol) Useful websites for support You, as well as all professionals involved, will have a copy of each clinic letter. From diagnosis to delivery: The fetal cardiology team will want to see you during your pregnancy. This is for a number of reasons: To assess how the baby’s heart is developing as your pregnancy continues After diagnosis around 20 weeks gestation , the fetal cardiology team will want to see you again to assess your baby’s heart’s development. This usually means coming back a further two/three times to University Hospital of Wales and at least once to the surgical centre- normally Bristol. At each appointment your fetal cardiologist will update you about your baby’s heart, and will tell you when they would like to see you and assess your baby again. The fetal cardiology team will provide you with information to help prepare you for when your baby is born To give you the opportunity to ask questions about your baby, how their heart is progressing and what that means for your baby once they are born The fetal cardiology team aims to provide you with support throughout your antenatal journey with you at the centre of the team. You should carry on attending local Obstetric as well as Fetal Medicine appointments. You can attend local antenatal or baby classes if you want to. Preparing for you baby’s birth: Your fetal cardiology consultant will tell you where your baby needs to be delivered. For babies that need to be delivered in Bristol at St Michael’s hospital: At about 32 weeks gestation you will have an appointment to attend St Michael’s to meet both their Fetal Medicine and Fetal Cardiology teams At this appointment, the Fetal Cardiology team will confirm the plan for your baby once it is born You will also have a tour of the different wards your baby will visit before they are discharged home Normal (vaginal) delivery is almost always possible for babies with heart defects except where there is a maternal reason You will be given an induction date at about 38-39 weeks of gestation at this appointment also

Information for parents expecting a baby with a heart condition Ideally you will be seen by your referring obstetrician or a fetal medicine specialist within 3 working days after the fetal cardiology visit. This is to ensure that all of the baby is assessed, not just the heart, to look for any other problems. Your obstetrician or the fetal medicine specialist will offer counselling regarding the future of the pregnancy (including the option to end the pregnancy) and amniocentesis will be offered to exclude genetic associations. Any pregnancy-related tests and investigations will carried out by your obstetrician or fetal medicine specialist and not the fetal cardiologist. Depending on the heart condition diagnosed you may be able to deliver at your local hospital. If the baby requires 24 hour cardiology care after birth you will be advised to deliver the baby either at the University Hospital of Wales or a surgical centre, usually St Michael’s Hospital, Bristol. Other surgical centres are in Birmingham and London . If the baby needs surgery within the first two weeks of life we will advise that you should deliver in a surgical centre (usually Bristol). If delivery is required to take place outside of your local hospital, then your referring obstetrician will make the necessary referrals. In some cases your local hospital may refer you directly to the Bristol Fetal Medicine Unit for continuing care during pregnancy. Fetal Cardiology do not undertake such referrals but we advise on appropriate or available treatment options available. If your baby’s condition requires you to go to multiple centres please adhere to the multiple appointments. If you go into labour before expected, you need to go to your local obstetric unit. They will assess you and transfer to appropriate centre. Information for parents expecting a baby with a heart condition