Heart Babies
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This information is only a guide. Every case should be treated individually.
This information does not replace proper medical information and care by your own health professional.
What are "heart babies"?
Every year, in the UK, about 5,000 babies will be born with congenital heart disease (CoHD).
About half these babies will have serious heart disease. And 1/3rd of babies with serious CoHD have a "duct-dependent" heart condition, this will be life-threatening, in the first few days after birth, so early detection is vital.
Congenital heart disease develops in the womb and covers a wide range of problems affecting different parts of the heart as it forms and grows. In many cases, this heart disease is undiagnosed and unexpected, and often requires emergency treatment, causing unnecessary distress and illness, putting a baby's health and life in danger and sometimes ending in tragedy.
Tiny Tickers is concerned with improving screening for heart conditions before birth, so that more families have a chance to be more involved during pregnancy and, together with doctors, have the opportunity to plan for a safer birth at the right time in the right place.
Who is at risk?
Every pregnancy has a small risk of congenital heart disease and, on average it affects almost 1% of all babies.
There is usually no known cause, so it is important for all women to have the opportunity of a screening scan.
If you have a family history of congenital heart disease (see below), the risk of having a baby with heart disease is slightly increased.
Age is also a factor, especially for women, as this increases the risk of abnormal chromosomes (known as aneuploidy).
Screening for heart conditions
Most women are offered a fetal anomaly scan in mid pregnancy (at around 18 to 20 weeks gestation) at which their baby can be imaged using ultrasound. For more information, see: Screening for heart disease in pregnancy
Tiny Tickers provides training to hospitals to improve scanning of a baby's heart. We recommend a complete scan of the heart (using a practical proven protocol such as the "5 Transverse Views"), which aims to detect most forms of heart disease.
It is impossible to detect all heart conditions, but we believe that this is the best way to detect most types of structural heart disease. Ask your maternity hospital about your scan. For more information, see: a better start - improving detection of heart disease in pregnancy.
Do you have a family history?
If you or your partner have congenital heart disease (CoHD), or have relatives with CoHD, or have had a baby with CoHD, then you have a family history of congenital heart disease.
This means the risk of having a baby with a heart condition is increased from about 1% to 3% or 5% (about 1 in 25), rising to 10% (1 in 10) if more than one relative or parent is affected.
When planning a pregnancy, inform your GP and doctor that you have a family history of congenital heart disease, so that you can receive pre-conception genetic counselling if appropriate and take appropriate nutrition (e.g. Folic Acid, which is recommended for all mothers to be).
Women will usually be offered a fetal anomly scan at around 18 to 20 weeks gestation (as described above) and there may be an option of an early "fetal echo" at about 14 weeks. Ask your GP or hospital for more information.
Tell any relatives about your family history, especially if they are planning a pregnancy, so that they can also speak to their GP and doctor to see if they have a slightly increased risk.