Tiny Tickers
Our charity partner is Tiny Tickers who work to improve early detection, diagnosis and care of CHD (Congentital Heart Defect) babies. We would appreciate any donations, however small, in memory of our beautiful granddaughter Heather-Sandra, who sadly passed away on 22nd May 2009, when she was only six days old. Please do this now while you think of it! You can donate to Tiny Tickers who work so hard to to improve early detection, diagnosis and care of CHD babies, or to the wonderful Charlton Farm Children’s Hospice who cared for Heather for the last days of her precious little life.
Detecting heart disease before birth can change lives. Every year in the UK about 2,400 babies are born with serious congenital heart disease. For 1/3 of these babies, this is life-threatening and early detection is vital. Tiny Tickers works locally and nationally to improve early detection, diagnosis and care and give these babies a better start in life.
Am I at risk?
Every pregnancy carries a small risk (about 1 in 145) that a baby will be born with heart disease and this increases slightly with family history, age and other factors.
How do I know if I have a family history of Congenital Heart Disease?
If you or your partner have CHD, or have relatives with CHD, or have had a baby with CHD, then you have a family history of congenital heart disease. If you have a family history, the risk of having a baby with heart disease is increased to between 3% and 5% (about 1 in 25), rising to 10% (1 in 10) if more than one relative or parent is affected. If you discover that there is a family history, it is worth telling any direct relatives about this, especially if they are planning a pregnancy.
Is age a factor?
The age of both parents can be a factor, especially for women, as this increases the risk of abnormal chromosomes (known as aneuploidy).
What can I do if I am at risk?
Inform your 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). Your baby will have a full screening scan at around 18 to 23 weeks gestation and there is an option for an early “fetal echo” at about 14 weeks.
Whatever my risk, what should I be doing in pregnancy?
All parents should ask for their baby’s heart to be properly scanned for congenital heart disease at the routine “20 week” scan. Tiny Tickers recommend the minimum scan should include the “4-chamber view” (the main pumping chambers) and the “outflow tracts” (the major arteries that carry blood from the heart to the rest of the body). The best scan is the “5 Transverse View” scan, which includes the above scans plus 2 more, hence “5 views”.
If a problem is discovered
It can be devastating to learn that your unborn child has a heart problem, but it can be comforting to know that you are not alone. You can talk to your doctor, GP or midwife, or a support group. There are many UK organisations that provide support (there is a list on the Tiny Tickers website). Support groups can provide help and advice on general issues in pregnancy as well as complex issues, such as congenital heart disease (CoHD) and special conditions. They may operate nationally, locally, or may be associated with a particular hospital. You can also meet other parents with similar experiences.
Hospices like Charlton Farm can offer a great deal of help to the families of children with life limiting, or life threatening conditions, (when they are not expected to live into adulthood). Some families may use the hospice for many years, from the time the child is first diagnosed, they may come for planned respite, or for emergency care, until months or even years after their child has passed away, depending on their needs and the support that the family request.
The Good News is that early detection of heart disease means that you and your baby can be referred to specialists for care and treatment. There are now over 150,000 adults living with congenital heart disease. There are many organisations that are dedicated to helping children and adults to live their lives to the full.