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Many congenital heart conditions (CHD) can now be picked up before birth by performing a detailed scan (fetal echocardiogram), though some conditions remain difficult to detect.
If a heart problem is suspected on the routine 18-20 week anomaly scan then a referral to the team in Liverpool or Manchester will be made. We see a wide range of CHD that can develop when the heart is not formed properly early in pregnancy. A proportion of babies diagnosed with CHD may have an underlying genetic or chromosomal problem or other abnormalities in other parts of the body. When we see a significant heart problem we usually recommend a detailed scan with a fetal medicine specialist to check the rest of the baby and discuss the option of an amniocentesis test to look for genetic problems.
For pregnant women at slightly higher risk of having a baby with CHD, a specialist echocardiogram is also recommended. For families where the mother, father or a previous child has a congenital heart condition, this can be a worrying time. After assessment, we can, in many cases, reassure the family that the baby’s heart is normal. In a small number of cases a problem with the heart may be detected.
The specialist fetal cardiology service for the North West, North Wales and Isle of Man network is provided at 2 centres - Liverpool Women’s Hospital and St Mary’s Hospital (Manchester). There are 4 Consultant Fetal and Paediatric Cardiologists from Alder Hey who perform these scans working together with fetal medicine consultants and specialist midwives.
You will have been given a lot of medical information to try to understand and for some families you may be coming to terms with the bad news. The cardiology and fetal medicine team will discuss all options with you. The time taken to reach the best decision for you and your family varies, some reach a decision quickly and for some the decision takes longer. Your Fetal Medicine midwife and the specialist nursing team are always available for support and guidance, or just to provide a listening ear.
Where there is a cardiac problem detected follow up appointments will be made and a plan is put in place for timing and place of delivery and management after birth. We hope that making the diagnosis before birth will improve the outcome for the baby and also gives the family time to prepare. Normal obstetric care should continue to be carried out by the medical staff and midwifery team at your local hospital. The fetal cardiologists work closely with the cardiac specialist nursing team in both Liverpool and Manchester.
Visits with the cardiac nursing team can be used to discuss the baby’s condition in more detail, give you time to ask any questions and visit the intensive care and cardiac ward. We can also arrange for families to meet with one of our cardiac surgeons where early neonatal surgery is expected.
For some babies with CHD it is perfectly safe and we would support delivery in the most local hospital. This means that the family can be closer to home and cardiac follow-up plans can be put in place before you go home. If the baby is likely to require early treatment or surgery after birth then delivery is usually planned at Liverpool Women’s Hospital or St Mary’s in Manchester. The fetal team will discuss delivery planning with you at your 20 and 28 week visits to make plans and "book" you in with the Manchester or Liverpool obstetric team between 28 and 32 weeks to transfer care if required. In the meantime your local team would still continue to see you.
If you go into ‘early labour’ then you should attend your local hospital and Alder Hey will be informed where you are delivering, all of the expected medical intervention will continue as planned as the local team will have received a copy of your reports and a plan for management will be documented in your fetal reports within your handheld notes.
If delivery is planned at Liverpool Women’s Hospital, the Neonatal team will also be involved in the 2nd clinic visit to assist the families and to familiarise them with the neonatal unit.
Continue with all your normal antenatal care and classes locally. Don’t be afraid to ask lots of questions - We want to be able to help and prepare you as much as possible and don’t mind if you come with a long list. Visit the special care baby unit at the hospital where you are going to deliver, this can be arranged with your midwife or by the fetal centre if you are delivering at Liverpool Women’s or St Mary’s.
A visit to Alder Hey can be arranged by contacting the cardiac specialist nursing team, you may also want to meet one of the cardiac surgeons. If you would like to speak to parents who have also had a baby with a heart condition, please let us know as we can put you in touch with other families with children who have previously had treatment at Alder Hey.
Liverpool Women’s Hospital
Crown St, Liverpool, Merseyside L8 7SS
Fetal Medicine Unit 0151 702 4072
Dr Joyce Lim Consultant Paediatric and Fetal Cardiologist
Dr Ram Ramaraj Consultant Paediatric and Fetal Cardiologist
Dr Umber Agarwal Consultant in Fetal Medicine
Fetal Specialist Midwives - Jackie Holian, Jane Evans, Karen Comber, Karen Gibbons, Jan Ratcliffe, Lucy Majilton, Jenny Robinson
Cardiac Specialist Nursing Team based at Alder Hey 0151 252 5291
Gill McBurney Fetal Cardiac Specialist Nurse
Marie Murphy Fetal Cardiac Specialist Nurse
St Mary’s Hospital, Manchester
Oxford Rd, Manchester, Greater Manchester M13 9WL
Fetal Medicine Unit 0161 276 6385
Dr Gordon Gladman Consultant Paediatric and Fetal Cardiologist
Dr Caroline Jones Consultant Paediatric and Fetal Cardiologist
Dr Philip Bullen Clinical Lead Fetal Medicine
Dr Koon Loong Chan Consultant in Fetal Medicine
Fetal Specialist Midwives - Lynn Kirby, Della Laryea, Jen O’Shea, Victoria Arthur
Cardiac Specialist Nursing Team based at Royal Manchester Children’s 0161 701 0664
Clair Noctor Lead Cardiac Specialist Nurse
St Marys website
Antenatal Results and Choices
Information and support to parents throughout antenatal testing, diagnosis and choices
73 Charlotte Street
LONDON W1T 4PN
Phone: 020 7631 0285 weekdays 10am-5pm
Children’s Heart Association
A support group run by families and friends of cardiac children for families with, or who have had, children with heart disorders 23 Hesketh Drive, Heswall, Wirral
Contact a Family
An organisation that can put you in touch with families in a similar situation
209-211 City Road
Children’s Heart Federation
National children’s heart charity working to meet the needs of children and young people with congenital and acquired heart conditions and their families Level One, 2-4 Great Eastern Street
LONDON, EC2A 3NW
0808 808 5000
Little Hearts Matter
Offers support and information for families with children/babies with single ventricle heart conditions 11 Greenfield Crescent
Edgbaston,Birmingham, B15 3AU
0121 455 8982
Supporting families affected by DiGeorge Syndrome, VCFS and 22q11.2 deletion
13 Meriden Avenue
Wollaston, Stourbridge, DY8 4QN
0300 999 2211
Downs Heart Group
Provides support and information relating to cardiac conditions associated with Down’s Syndrome
17 Cantilupe Close
Eaton Bray, Dunstable, LU6 2EA
Nicor antenatal diagnosis - https://nicor4.nicor.org.uk/chd/an_paeds.nsf/vwContent/Antenatal%20Diagnosis?Opendocument
Alder Hey Children's Charity