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A friend of mine wrote this haibun (Haibun is a combination of prose and haiku poetry)about Jamie shortly after his diagnosis and surgery. Thanks so much Stacey, I love it, especially the haiku.
My friend’s son, Jamie, was born a week before my own baby. We were eager to watch our babies grow up together. As time went on my baby got bigger; Jamie didn’t. My friend was worried and took Jamie to doctor after doctor. Months went by and Jamie didn’t gain any weight, despite everything the doctors tried. I felt guilty that my baby was getting bigger and stronger while Jamie was not. When our babies were 9 months old, my friend finally got the answer: Jamie had a serious heart defect.
My broken heart
Prayers for skilled hands
To mend his
I'd like to meet:
What is a 'congenital heart defect'?
Congenital means 'from birth'. A congenital heart defect is therefore an abnormality of the heart that has been present from birth.
How common are these defects?
Every year at least eight out of every 1,000 babies born in the UK have some sort of heart defect. About half of these babies have a minor defect and will not need any treatment but the rest will need either medical treatment or surgery.
What causes the defects?
In most cases the cause is completely unknown. Some abnormalities are a result of the mother's health during pregnancy - for example if she has diabetes or SLE (systemic lupus erythematosus - a disease which affects the immune system).
Drugs taken in pregnancy - such as some of those prescribed for epilepsy, illegal drugs or alcohol - are known to cause certain heart defects. Smoking is also thought to be a factor.
All this does not mean that women with diabetes or epilepsy cannot have healthy children but they do need careful attention during their pregnancies. As more research is done, we are also discovering that some heart defects are genetic (which means they can be passed on from a parent to a child through the genes).
How is a congenital heart defect discovered?
Nowadays, many heart defects are picked up when the mother has a routine ultrasound scan during pregnancy. If there is a suspicion something may be wrong with the developing baby's heart, the doctors will recommend the woman has a foetal echocardiogram.This test is done at a specialist centre at about 16-20 weeks of pregnancy. It allows doctors to see the baby's heart in more detail than in the routine ultrasound scan.
If the woman has already had a baby with a heart defect or if either she or her partner has had a defect, the doctors will advise having a foetal echocardiogram because of the slightly increased risk.Some defects are not discovered until after the birth. The baby may look 'blue' or may be breathless and unable to feed. In black children the blueness is more noticeable inside the mouth, on the lips and tongue and under the nails.Most defects nowadays are discovered in early life and treated, if necessary. However, some are not discovered until later and some not until adulthood.
Click Here to visit Heartline Association
Click here to visit the Children's Heart Federation
Click here to visit the Children's Heart Association
Click here to visit Little Hearts Matter
Click here to visit Heart Transplant Families Together
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Click here to visit the Cardiomyopathy Association
Click here to visit Max Appeal
Click here to visit the Down's Heart Group
Click here to visit the Children's Heart Unit Fund
Click here to visit the Scottish Association of Children with Heart Disorders
Click here to visit Heartlink
Click here to visit Young at Heart
Click here to visit ECHO (Evelina Children's Heart Organisation)
Click here to visit Wessex Children's Heart Circle
Click here to visit South West Children's Heart Circle
Click here to visit Grown Up Congenital Heart Patient's Association
Click here to visit the British Heart Foundation Click here to visit the Congenital Heart Defects Awareness Quilt Project
Television:
Sorry that the number is wrong, it should say 125, but you get the idea.
Heroes:
My son, Jamie. He has been through so much in his short life and is a real inspiration to me. He has taught me more about life in 2 years than I have learned in my whole 28 years! Mama loves you Darth 'tatoe!!
