"a better start" -
the benefits of improving detection of congenital heart
disease before birth.
The benefits of detection
in pregnancy
Tiny Tickers is dedicated to improve the detection, care and
treatment of congenital heart disease in babies, before they
are born.
Every
year in the UK, almost 2,400 babies
and their families
will be affected by serious congenital heart disease and will
require careful monitoring during pregnancy and specialist treatment
in the first months of life.
Most babies with serious heart disease are missed by antenatal screening, despite the
many benefits of detection.
We want to ensure that more babies are detected by screening and
have a better start in life.
There are many benefits in detecting congenital heart disease before
birth:
- Better care for mums and babies during pregnancy,
including regular monitoring
- Parents have time to understand their
baby's condition and can be involved in decisions about their pregnancy
- More time for preparation and treatments
before, during and after a baby is delivered
- Doctors can plan for safer delivery at the right time, in the
right place (such as a specialist heart unit)
- Life-threatening emergencies can be avoided, saving time and
resources
- Avoids new-born babies going home and become unexpectedly ill
(some babies have a type of heart disease that is life threatening
in the first few days of life, if not found)
- Gives babies the chance for a better quality of life, right from
the start
How
to improve
detection
At 20 weeks', a baby's heart is extremely small - about the size of a
pea -
yet fully formed. It weighs only 1 gram or so (compared to 500 grams for an average
adult heart) and beats over twice as fast as an adult's.
Considering the smallness and complexity of a baby's heart,
it requires training, experience and modern, high resolution
ultrasound equipment to detect heart problems.
Results show that the current detection
rate is about 30% on average, but there is widespread
variation, depending on where you live. Link: Antenatal Diagnosis statistics, 2004-2008
We train sonographers to scan an unborn
baby's heart using a practical "5
View protocol" that aims to improve the detection of most forms of heart
disease at about 20 week's gestation.
IMAGE (above) a
computer-enhanced, 2-dimensional ultrasound image of a fetal
heart >>
Spread the word
Congenital heart disease is much more common than
people think and about 70% of babies are not
detected before birth, despite the many benefits (see above).
We are trying to improve the detection of heart
disease before birth and we need your help. Please spread the word aboutwww.TinyTickers.org and
help to give heart babies a better start in life.
What is "congenital
heart disease"?
How the heart develops
The development of the heart occurs in the first 50 days of life
after conception and is an incredibly complex process.
We
are still learning what happens in the first few days of life, but
we think that the heart starts off as a "tube" that simply squeezes
blood. As development continues, the left and right sides of
the heart form and are separated by tissue known as the "septum".
The heart is comprised of 4 chambers
(2 collecting chambers "atriums" and two pumps "ventricles") to
allow blood to gather ready for the next heart beat. There are
valves to direct blood flow into the pumps and to the rest of the
body and ensure it goes in one direction. The heart muscle is
regulated by an electrical system that makes it contract and relax.
 All of our organs need oxygen to function and our
blood carries this oxygen.
In an adult, blood flowing through our lungs
absorbs the oxygen we breathe and this oxygenated, "red" blood is
pumped by the left heart-pump to our organs. Our organs absorb
some of the oxygen and
de-oxygenated, "blue" blood returns back to the lungs via the veins,
pumped by the right heart-pump.
Having two separate pumps means that the "red"
blood does not mix with "blue" blood.
Before birth, a baby receives "red" blood from
it's mother's placenta and its lungs are bypassed because they are
filled with fluid. The differences between red and blue blood
are much smaller in the fetus than after birth.
IMAGE:
The human heart, before birth
(click to see more detail) >
Congenital heart disease
Congenital heart disease (CoHD) literally means heart disease that
you are "born with", and on average, it occurs in 1 child in every
145 births. We now know that congenital heart disease develops
before birth, but the name has stuck.
When the heart is forming, there is a small chance that it
does not develop properly. There may be a problem with the
"pumps" or with the "plumbing" of the heart, so that it may not be able to pump blood
regularly or efficiently.
The effect of congenital heart disease is often
to reduce the amount of "red" (oxygen-rich) blood that is able to
circulate and reach the organs. After birth, when there is increased strain
on the heart and a greater need for oxygen, a baby or child can appear
"blue" as well as breathless.
How serious is a heart problem?
There is a wide range of heart disease: from
very mild (requiring little or no surgery) to very serious, where babies may require
several surgical operations throughout life and may eventually require a heart transplant.
The diagnosis of a heart problem is often a life-long issue requiring regular care by
paediatric (children's) cardiologists and later by specialists in
adult, or "grown-up", congenital
heart disease (ACHD or GUCH).
[Link:After pregnancy & birth: Recognising
the signs of heart problems]
Detecting
and diagnosing
by ultrasound
Detecting congenital heart disease before
birth relies on ultrasound, which uses high frequency sound waves
that can see inside the body. Ultrasound was developed in the 1950s and has
now become highly sophisticated so that we can now see the tiny
structures of the heart before birth.
Ultrasound is one of the safest ways of
screening for congenital problems, assessing normal development and
checking for any other problems affecting the womb or placenta.
The use of ultrasound use for non-medical reasons (e.g. taking
pictures of a baby in the womb as a keep-sake) has been questioned
and, at this time, is not recommended.
If there is a family history
...
Every pregnancy has a small risk of congenital
heart disease and this risk increases if there is a
family history, where another member of the family has had
congenital heart disease. In this case, parents can have a
diagnostic test (called a "fetal echo"). For more information:
refer toscreening.
Specialist Diagnosis
There are many types of congenital heart
disease, but we are all individual and heart disease can vary in
degree and affect us in different ways. A specialist can help
to take some of the guess-work out of this very complex and
often misunderstood area of medicine.
A fetal or perinatal cardiologist (or paediatric
cardiologist with fetal cardiology training) can perform a "fetal
echo" using ultrasound and provide a diagnosis. They can also
explain what this may mean for an individual and provide more information
based on that diagnosis.
Congenital heart disease can change, becoming
better or worse over time, as a baby develops in the womb, so a
specialist will arrange for regular check-ups to monitor the
progression of the disease.
Grown-up Heart Babies
Heart disease
is not always a problem. There are at least 150,000 adults with
congenital heart disease in the UK alone and maybe many more, as
many people never have a diagnosis.
Both Arnold Schwarzenegger, actor and politician,
and Kanu, the
Nigerian born striker (who recently helped his team win the FA Cup
2008), have had heart
surgery to correct a congenital heart problem.
"Hole in the heart"
A common example of congenital heart disease is a "hole in the heart"
where there is a mixing of red and
blue blood, often due to a hole in the septum (separating the
chambers), which is known as a VSD or
AVSD.
Before birth, we all have two important "holes in
the heart" which are part of our circulation before birth - the Oval
Foramen (Foramen Ovale, FO) and the Arterial Duct (Ductus Arteriosis,
DA).
The Oval Foramen is really a "flap" that
allows
red, oxygenated blood from the mother's placenta to flow into a
baby's heart. This hole usually closes soon after a baby is
born and adapts to breathing air. If it does not close
completely, it is called a Patent Foramen Ovale (PFO) and having a PFO has been linked to
migraines in adult life.
The Arterial Duct functions as a bypass for
the lungs which are not needed before birth. After birth, this
duct usually closes. If it does not it is know as a persistent arterial duct, PDA.
See our diagram of
a fetal heart for more information.
Facts & figures
UK Births = approx.
6900,000 (Source: UK
Government Statistics, 2007)
On average, congenital heart disease affects 1 in
every 145 births, or about 4,800 babies per year in the UK.
About half of these babies have serious or
life-threatening heart disease, so about 2,400 every year.
In 1999, 23% of major congenital heart disease was
detected before birth, on average across the UK (Bull, Lancet, 1999).
We have no reliable statistics for detection
rates, today, but recent CCAD statistics estimate that about 30%
babies with major CoHD are now detected before birth.
*
Congenital anomaly surveillance in England - ascertainment
deficiencies in the national system, BMJ, 2005
Links For all links visit our
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