About "heart babies"
This page is all about how congenital heart disease
develops and the benefits of detection before birth.
Other topics include:
- screening
- when and how to screen for congenital heart disease at
the 20-week scan
-
experiences - parents share their experience of
congenital heart disease, in words and pictures
- support
- links to support for parents and families
- community
- before, during and after pregnancy
- links
- a list of all the links in this section
Benefits of detection
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 5,000 babies
and their families
will be affected by a congenital heart disease.
About half of these heart problems will be serious 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
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 >
Congenital heart disease
Congenital heart disease (CHD) 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.
An 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, which is known as a VSD
, ASD or AVSD.
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]
Detection and
Diagnosis by Ultrasound
Even though we can detect heart disease before
birth using medical ultrasound, we still use the term "congenital"
heart disease.
The detection of congenital heart disease before birth relies on ultrasound, which uses high frequency
sound waves that can see inside the body. The advantage over X-rays
is that there is no radiation exposure.
Ultrasound was developed in the 1950s and has
become highly sophisticated so that we can now image 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 to
screening.
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, have had heart
surgery to correct a congenital heart problem.
A hole in the heart: Sometimes a
"hole in the heart" is due to undetected, mild congenital heart
disease (e.g. a small VSD) and
sometimes it is due to a problem at birth as a baby's blood
circulation changes from a fetal circulation to a normal circulation
(e.g. a persistent arterial duct, PDA
or a patent oval foramen, PFO). A PFO has also been linked to
migraines.
Facts & figures
UK Births = approx.
700,000 (Source: UK
Government Statistics)
On average, congenital heart disease affects 1 in
every 133 births, or about 5,000 babies per year in the UK.
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.*
While some areas are doing very well, we estimate that 1 in 3 (33%) babies with
major CHD are detected
before birth.
*
Congenital anomaly surveillance in England - ascertainment
deficiencies in the national system, BMJ, 2005
Links
For all links visit our
Links page
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