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Introduction
The following booklet is a guide to congenital heart disease. It explores the following
areas related to congenital heart disease:
-
What is congenital heart disease?
Different Types
Symptoms
Diagnosis of the disease
Treatment Options (including some medications)
Prevention
Situations in which an individual with congenital heart disease would be considered
medically fragile
Family resources and Diagrams
There are many additional links and resources within the booklet, designed to facilitate
further learning and understanding of congenital heart disease. These include diagrams, as well
as links to external videos, interactive models and games for children. Enjoy!
Congenital Heart Disease: Meaghan Barrett, October 9th, 2013
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What is Congenital Heart Disease?
Congenital heart disease happens at birth where the blood vessels near the heart
and/or the heart itself, do not develop properly. It occurs in about 1% of children and the cause
is unfortunately unknown for many of these cases.
Great medical advances have been made surrounding detection, treatment and support
for children with congenital heart disease. The percentage of children with congenital heart
defects who live well into adult hood has risen from less than 20% to over 90% in a little over 60
years! Advances in medicine continue to improve the quality of treatment and care into their
adult years.1
Before learning about what can go wrong with the heart, it is important to understand
what a healthy heart looks like and how it functions:
How does a Healthy Heart Work? - http://www.youtube.com/watch?v=ep4cQrYFL0w
What are the Different Types of Congenital Heart Disease?
There are many different types of congenital heart disease, some falling under larger
categories, others specific conditions unto themselves. The chart below outlines each larger
and individual category as well as an overview of each disease.1
= congenital heart disease related to obstruction of blood flow
= congenital heart disease related to septal defects (holes in the heart)
= congenital heart disease related to oxygen levels
Type of Congenital Heart Disease
Pulmonary Stenosis
Pulmonary Atresia
Tricuspid Atresia
Description
the pulmonary valve allows blood to flow from the
right ventricle of the heart to the lungs. An individual
with Pulmonary Stenosis has a narrowed pulmonary
valve, which means that the heart needs to pump
harder to compensate.
Complications: stress on/enlargement of the right
ventricle.
the pulmonary valve is closed at birth due to
underdevelopment. The blood is then not able to
flow to the lungs to become oxygenated.
Complications: if left untreated, pulmonary atresia is
fatal.
The tricuspid valve controls blood flow between 2
chambers; the right atrium and the right ventricle. An
Congenital Heart Disease: Meaghan Barrett, October 9th, 2013
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Aortic Stenosis
Coarction of Aorta
Atrial Septal Defects
Ventricular Septal Defects
Patent Ductus Arteriosus
individual with tricuspid atresia has no opening
between these two chambers. The blood is not able
to flow to the lungs to become oxygenated.
Complications: if left untreated, tricuspid atresia is
fatal.
The aortic valve allows blood to flow between the left
ventricle and the aorta. An individual with aortic
stenosis has a narrowed aorta, which makes it
difficult for the heart to pump blood to the rest of the
body.
An individual with coarction of the aorta, has an aorta
that is “pinched”. This reduces the flow of blood to
lower parts of the body.
Complications: an increase in blood pressure above
the obstruction or “pinch”.
An individual with an atrial septal defect has an
opening between the two upper chambers of the
heart (atria). This causes the blood to take “the wrong
path”:
Normal Path = left atrium – left ventrical – aorta – to
the rest of the body.
Wrong Path = left atrium – back to the right atrium
Complications: the severity of the problem depends
on the size of the hole. In some cases, if the hole is
small enough, there are no complications.
An individual with a ventricular septal defect has an
opening between the two lower chambers of the
heart (ventricles). This causes the blood to take
another “wrong path”:
Normal Path: blood returns from the lungs – to the
left ventricle – to the aorta – to the rest of the body
Wrong Path: blood returns from the lungs – to the
left ventricle – flows through to the right ventricle.
Complications: the severity of the problem depends
on the size of the hole.
The ductus arteriosus is a blood passage way that is
typically closed by the time a child is born. When it is
not, too much blood can flow to the lungs.
Complications: the severity of the problem depends
on the size of the opening. Medication, catheterbased techniques or surgery can be used to fix the
opening.
Congenital Heart Disease: Meaghan Barrett, October 9th, 2013
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Cyonic Defects
Tetralogy of Fallot
Transposition of the Great Arteries
Ebstein’s Anomaly
This simply means there is not enough oxygen in the
blood being pumped through the individual’s body.
This causes the skin to be a blue-ish color. The term
“blue baby” is often used to describe this defect at
birth.
An individual with tetralogy of Fallot has low levels of
oxygen in their blood, due to four specific defects:
1. A ventricular septal defect (see above)
2. Narrowing of the pulmonary valve; this block
the flow of blood from the right side of the
heart to the lungs
3. A right ventricle that is more muscular than
normal
4. Their aorta is lying over top of the right
ventricle; this means the poorly oxygenated
blood is not flowing into the aorta
In this condition, the pulmonary artery and the aorta
have traded places! This means that the majority of
the blood that is returning to the heart from the rest
of the body to get “re-energised” with more oxygen
isn’t able to be pumped to the lungs to receive that
oxygen before it goes back out the body again.
The tricuspid valve controls the blood flow between
the right atrium and right ventricle. An individual with
Ebstein’s anomaly has a tricuspid valve which is lower
than it should be. This causes the ventricle to be too
small and the atrium to be too large.
What are the Symptoms of Congenital Heart Disease?
While specific symptoms can vary based on the type of congenital heart disease, there
are a number of common symptoms and early signs to pay attention to 1:
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Heart murmur
A bluish tint to the child’s skin, lips, and fingernails (often referred to as “blue baby”)
Abnormally fast breathing
Shortness of breath
Poor feeding – the child may tire easily while nursing due to shortness of breath or
abnormally fast breathing
Poor weight gain (due to poor feeding)
Fatigue during activities or exercise
Congenital Heart Disease: Meaghan Barrett, October 9th, 2013
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How is Congenital Heart Disease Diagnosed?
In addition to a typical physical exam, the doctor may use one or more than one of the
following tests to determine if an individual has a congenital heart defect/disease1:
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Fetal Echocardiogram – this test is done before the child is even born. An ultrasound is
used and will create a visual image of the sound waves from the baby’s heart. The
doctor can then determine if there is a congenital heart defect or disease and then
begin to plan accordingly with the parents.
Echocardiogram – this test is done after the child is born. The doctor will use an
ultrasound machine to observe the heart while it is in motion. These images can then be
used to identify any abnormalities in the heart muscles and valves.
Electrocardiogram – this test involves placing electrodes on the child’s chest, which
provide information to a computer about any potential heart defects or heart rhythm
problems.
Chest X-ray – this test is used to determine if the heart is enlarged or if the lungs have
excess fluid or blood in them. Both could be a sign of heart failure.
Pulse Oximetry – this test determines if there is enough oxygen in the blood. A small
sensor placed on the finger measures these levels.
Cardiac Catheterization – this test involves inserting a catheter via blood vessel, which
travels to the heart. This allows the doctor to have a more detailed picture of a potential
disease or defect. It can also be used as a less invasive form of treatment.
How is Congenital Heart Disease Treated?
Treatment for congenital heart disease is very individually based. Doctors must take into
consideration the type and severity of the condition, the age of the individual, whether or not
the condition will correct itself over time without medical intervention or whether options such
as medication or surgery are necessary. Families may go through what is known as a watchful
waiting period; this simply means that the doctor will monitor a child’s condition over time to
see how it progresses, and act accordingly with medical treatments or lack thereof. 2
For those who do require medical intervention, there are several options depending on
the condition:
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Medication:
o Medications for congenital heart disease can be prescribed for a variety of
different reasons. Some individuals may take medication before and after
surgery in order to reduce pain and improve the hearts functioning as much
as possible. For others, medication may be the only option to treat their
Congenital Heart Disease: Meaghan Barrett, October 9th, 2013
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condition. Some of these medications are temporary while others must be
taken throughout life.3 The chart below outlines some examples of
medications that fall into many of the above categories1:
Name of Medication
ACE (angiotensin-converting enzyme)
Inhibitors
Beta-blockers
Diuretics
Digoxin
Purpose
This medication helps to lower blood pressure,
allowing the blood to flow better and causing
less stress on your heart. They are used to
reduce feelings of fatigue, shortness of breath
and increase life expectancy.
How long to I have to take it? – this
medication is typically taken throughout life.
This medication helps to treat high blood
pressure, heart failure, arrhythmia and angina
(chest pains). It works by slowing the heart
rate and lowering blood pressure, so there is
less stress on your heart.
How long do I have to take it? – the amount
of medication and duration is determined by a
doctor, based on the specific condition.
This medication works with your kidneys,
helping your body to produce more urine and
getting rid of excess salt and water from your
system. Reducing the water and salt helps
lower blood pressure, so there is less stress on
your heart (eg – your heart is able to pump
easier, reducing the feelings of shortness of
breath, etc.)
How long do I have to take it? – the amount
of medication and duration is determined by a
doctor, based on the specific condition.
This medication works with your heart`s
pumping ability, making it stronger or slowing
it down. Many children with a heart rhythm
disorder, heart failure or a weak hear muscle
are prescribed digoxin.
How long do I have to take it? – the amount
of medication and duration is determined by a
doctor based on the specific condition.
*Interesting Fact* - individuals taking digoxin
should avoid black licorice. The combination
can result in irregular heart rhythms.
Congenital Heart Disease: Meaghan Barrett, October 9th, 2013
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Non-Surgical Procedures
o Cardiac Catheterization – this procedure is used to repair holes in the heart. A
catheter is inserted via a blood vessel, which allows the doctor to insert a plug
into the hole to repair it.1
o Percutaneous Coronary Intervention (PCI) – this procedure is used if the
individual’s heart valve(s) is/are too narrow or leaky. A catheter is used to guide
a small balloon to the site. It is then inflated the appropriate amount to allow
proper blood flow. Once this is achieved the balloon can be removed and in
some cases a stint is put in place to support the newly enlarge valve 1.
o Percutaneous Valve Implantation – this procedure replaces the individuals
malfunctioning valve with an artificial valve1.
Surgical Procedures:
o Open Heart Surgery – this procedure is performed by fully sedating the
individual, exposing their heart through a process called sternotomy (making a
cut through the sternum or breast bone), and causing the heart to temporarily
stop using specific medication and a cooling process. During the time that the
surgeons are repairing the heart defect, a machine called a Heart-Lung Bypass
Machine, ensures that blood is still flowing throughout the body.
 What does it correct? – open heart surgery is typically used to treat
ventricular septal defect, transposition of the great arteries and
tetralogy of Fallot2.
o Closed Heart Surgery – this procedure is less invasive than open heart surgery. It
only involves exposing a portion of the heart and therefore the stopping of the
heart and use of the heart-lung bypass machine are not needed. This also means
that the individual has a shorter hospital stay and recovery time.
 What does it correct? – closed heart surgery is typically used to treat
patent ductus arteriosis, coarctation of the aorta, as well as placing
shunts to improve blood flow to the lungs2.
o Heart Transplant – this procedure involves the full removal of a heart that is not
working properly and replacing it with a healthy donor. A transplant is typically
the last option for an individual who has a very complex congenital heart defect
that cannot be treated with medication or corrective surgery4.
Can I Prevent Congenital Heart Disease?
Congenital Heart Disease: Meaghan Barrett, October 9th, 2013
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Typically, there is very little that can be done to prevent congenital heart disease, as it is
often hereditary or developmental in nature. However, there are some steps that can be taken
to decrease the risk of possible environmental factors:
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Women should be vaccinated against Rubella.
If a woman has a chronic condition such as diabetes or epilepsy, she should discuss
her pregnancy ahead of time with her doctor to determine if any special medications
or diet are required.
Proper pregnancy guidelines should be followed, including taking folic acid as well as
avoiding drugs and alcohol5.
If an Individual Has a Congenital Heart Disease, Are They Considered Medically Fragile?
The term Congenital Heart Disease encompasses many different conditions, not all of
which would cause an individual to be considered medically fragile. An individual must meet
two of the following criteria in order to be considered medically fragile:
1. The child has a serious, ongoing illness, OR a chronic condition that has lasted or is
anticipated to last at least 12 months OR has required at least one month of
hospitalization, at that requires daily, ongoing medical treatments and monitoring by
appropriately trained personnel which may include parents or other family members.
2. The child requires the routine use of a medical device or of assistive technology to
compensate for the loss of usefulness of a body function needed to participate in
activities of daily living.
3. The child lives with ongoing threat to his or her continued well-being7.
The following four scenarios outline cases in which an individual with congenital heart
disease would be considered medically fragile. This is in no way an exhaustive list, as there are
many different complications that can arise from congenital heart disease.
Heart Infection (Endocarditis)8
Endocarditis occurs when an infection enters the blood stream, attaches itself to the
inside of the heart and then multiplies. These bacteria can then travel through the aorta, to the
arteries in the brain causing blockages, which can lead to a stroke. Individuals with congenital
heart disease are more susceptible to endocarditis due to a number of different heart
abnormalities:
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Rough area on the heart lining
Abnormal opening in the heart
Leaky valve
Congenital Heart Disease: Meaghan Barrett, October 9th, 2013
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Build up scar tissue (typically after surgery)
All of these rough areas provide an easy place for bacteria to attach and multiply 9.
So…why is someone considered medically fragile? – one of the complications of Endocarditis is
blood clots in the brain, leading to stroke. The long term effects of a stroke can be very
debilitating and may include any number of the following:
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Weakness on one side of the body (hemiparesis).
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Paralysis on one side of the body (hemiplegia).
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One-sided neglect, where the child ignores the weaker side (unilateral neglect).
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Difficulty with speech and language (aphasia).
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Trouble swallowing (dysphagia).
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Vision problems (decreased field of vision or perception).
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Loss of emotional control and mood changes.
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Problems with memory, judgment or problem-solving (cognitive changes).
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Behavioural or personality changes.
There are many aspects of these effects of stroke that would cause a child to be considered
medically fragile. Paralysis may cause the child to require the use of assistive devices in order to
participate in daily activity. The difficulty swallowing may result in the need for monitoring for
instances such as choking or aspiration. It is also important to remember the emotional or
psychological implications of a stroke. With the occurrence of mood changes, behavioural or
personality changes as well as simply the emotional struggle of dealing with all the effects of a
stroke, a child may struggle with mental health concerns such as depression or anxiety. This can
cause the child to have a continued threat to their well-being, as outlined in part 3 of the
definition.
Want to learn more about Endocarditis?: http://www.youtube.com/watch?v=vNuijvjGZBE
Congestive Heart Failure
Congestive heart failure is a very serious complication of congenital heart disease,
causing the heart to have difficulty pumping blood to the rest of the body. It is typically related
to structural defects and can cause rapid breathing, difficulty feeding and poor weight gain10.
There are two types of problems that can occur with congestive heart failure 15:
Congenital Heart Disease: Meaghan Barrett, October 9th, 2013
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1. Sysytolic Dysfunction: the heart isn’t able to pump enough blood to meet the body’s
needs, also referred to as pump failure.
2. Diastolic Dysfunction: the heart isn’t able to accept all the blood that is being sent to it.
In this case, there is too much fluid and blood in the heart, which must be drained
manually or over time with medication and hospital stay.
So…why is someone considered medically fragile? – if the diagnosis is pump failure (systolic
dysfunction), the individual may be required to have an extended hospital stay in order for the
heart to improve its functioning. This is consistent with part 1 of the definition. Other surgical
options may also be presented such as a pace maker or in severe cases a heart transplant. In
the case of a pacemaker, the individual is now relying on the use of a medical device, which is
consistent with part 2 of the definition. If a heart transplant becomes a reality, the individual is
now faced with both part 1 and part 3; hospitalization and the continued threat to their wellbeing up until the time when a donor heart can be found and transplanted.
Want to learn more about Congestive Heart Failure?:
http://www.youtube.com/watch?v=RHJBVTdBJvI
Pneumonia
Individuals with congenital heart disease are also more prone to reoccurring respiratory
infections, including pneumonia. Pneumonia is an infection in one or both of the lungs. Small
sacs called alveoli, which typically absorb the oxygen into the blood to help you breathe, are
blocked by fluid and mucus from the infection13.
Most individuals recover completely from pneumonia, with no complications. However,
some complications may arise:
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Bacteria in the blood stream: this can cause infection to spread to other parts of the
body, and in extreme cases can cause organ failure.
Fluid accumulating around the lungs (pleural effusion): if the fluid that has accumulated
becomes infected, it may need to be drained through a chest tube or through surgery.
Difficulty breathing: the degree of difficulty will depend on the individual. In severe
cases, the child may need to be hospitalised and use a ventilator while their lungs heal14.
So…why is someone considered medically fragile? – an individual with severe pneumonia may
require the use of a ventilator in order for them to breathe, which is consistent with part 2 of
the medically fragile definition. As well, if the child is hospitalised, they will require constant
care and supervision in order to monitor their breathing as well as the spread of infection to
other parts of the body. This is consistent with part 1 of the definition.
Congenital Heart Disease: Meaghan Barrett, October 9th, 2013
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Want to learn more about Pneumonia? : http://www.nebraskamed.com/health-library/3d-medicalatlas/98/congestive-heart-failure
Secondary Polycythemia, Leading to Blood Clots and Stroke12
Individuals with congenital heart disease may also suffer from Secondary Polycythemia,
a condition where there are too many red blood cells in the blood. It can cause complications
such as:
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Blood clots
Gout
Stroke
Heart attack
Ulcers
Kidney stones
Lukemia
In the majority of cases, secondary polycythemia is treated by attending to the underlying
congenital heart defect that is causing the condition.
So…why is someone considered medically fragile? – blood clots, stroke, heart attacks and
leukemia are all conditions that would require either a prolonged hospital stay or ongoing
medical treatment, consistent with part 1 of the definition. Where leukemia and in some cases
stroke are concerned, the child may have a continued threat to their well-being (part 2). This
can occur in a physical way (eg. Chemotherapy) but also in an emotional way (eg. Depression or
anxiety related to their current medical condition or state.)
Want to learn more about Secondary Polycythemia?:
http://emedicine.medscape.com/article/205039-overview (website)
Necrotizing Enterocolitis (NEC)
Occurring shortly after birth, NEC is a life threatening disease that causes inflammation
and destruction of the intestines. While it is most common in babies born prematurely, there is
also an increased risk for babies born with congenital heart disease who have undergone the
procedure to repair hypoplastic left heart syndrome (HPLHS).18 Some studies also suggest that a
lack of oxygen at birth as well as an increase in red blood cells can contribute to the
development of NEC. 19
Congenital Heart Disease: Meaghan Barrett, October 9th, 2013
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Although one specific cause is not known, the consequences of NEC can be very serious
and life threatening The tissue of the babies intestines are weakened due to inflammation and
therefore, when they begin feeding, the added stress of the food moving through the intestine
causes bacteria to further damage the walls of the intestines themselves. A baby with NEC may
present with any of the following symptoms:
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Poor feeding
Feeding stays in the stomach longer than normal
Decreased bowel sounds
Bloated abdomen
Green (bile colored) vomit
Increase in OR lack of stools
Blood in stools
Treatment of NEC requires the use of antibiotics and constant monitoring of the abdomen
and intestines. In severe cases, surgery may be done to remove the damaged section of the
intestine OR the surgeon may recommend the use of a temporary ostomy. If left untreated,
NEC is fatal.19
So…why is someone considered medical fragile? – the monitoring and treatment of NEC
requires the baby to remain in the hospital for tests, administering of medication, potential
surgery as well as the process of regaining strength and consistent feeding. This is consistent
with part 1 of the definition. If the baby does require surgery, this can cause more long term
gastrointestinal issues such as intestinal blockages due to scarring of the tissue, or issues with
absorption of nutrients in the intestines.19 Finally, NEC can cause an ongoing threat to the
baby’s well-being, consistent with part 3 of the definition. While treatment is available, the
disease can progress very quickly and become life-threatening at a moment’s notice.
Want to learn more about Necrotizing Enterocolitis (NEC)?:
http://kidshealth.org/parent/medical/digestive/nec.html
Congenital Heart Disease: Meaghan Barrett, October 9th, 2013
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Anatomy of the Heart
*Want more information about the anatomy of the heart? – follow the link below to learn
about the anatomy of the heart, the heartbeat and blow flow through an interactive model!*
http://www.aboutkidshealth.ca/En/HowTheBodyWorks/IntroductiontotheHeart/Pages/default.aspx
Congenital Heart Disease: Meaghan Barrett, October 9th, 2013
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Family Resources
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-
Exploring the Heart for Kids! – an interactive explanation of how the heart functions:
http://www.aboutkidshealth.ca/En/HowTheBodyWorks/IntroductiontotheHeart/Pages/default.
aspx
Just for Kids Word Search – Exploring the Heart!
http://www.aboutkidshealth.ca/En/Documents/J4K_PDF_Act_WordSearchCardiology_EN.pdf
Exploring the Heart Coloring Pages:
http://www.aboutkidshealth.ca/En/Documents/J4K_PDF_heart1_EN.pdf
For Parents – “Heart and Soul: A Guide to Congenital Heart Disease”:
http://www.heartandstroke.com/site/c.ikIQLcMWJtE/b.3751073/k.9C8F/Heart_disease__Heart
__Soul_A_guide_to_congenital_heart_disease.htm
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Works Cited
1Heart
and Stroke Foundation(2013). Congenital Heart Disease. Retrieved from:
http://www.heartandstroke.com/site/c.ikIQLcMWJtE/b.3484063/#types
2Russel, J. (2009). Treatment of Heart Conditions. Retrieved from:
http://www.aboutkidshealth.ca/En/ResourceCentres/CongenitalHeartConditions/TreatmentofC
ongenitalHeartConditions/Pages/default.aspx
3Hales, B., & James, A. (2009). Medications. Retrieved from:
http://www.aboutkidshealth.ca/En/ResourceCentres/CongenitalHeartConditions/TreatmentofC
ongenitalHeartConditions/Medications/Pages/default.aspx
4 Dipchand, A. (2009). Heart Transplants. Retrieved from:
http://www.aboutkidshealth.ca/En/ResourceCentres/CongenitalHeartConditions/TreatmentofC
ongenitalHeartConditions/HeartTransplants/Pages/default.aspx
5 Russel, J., & Golding, F. (2010). About Heart Conditions. Retrieved from:
http://www.aboutkidshealth.ca/En/ResourceCentres/CongenitalHeartConditions/AboutCongen
italHeartConditions/Pages/default.aspx
6 Mayo Foundation for Medical Education and Research (MFMER).(2013). Congenital Heart
Defects in Children: Tests and Diagnosis. Retrieved from:
http://www.mayoclinic.com/health/congenital-heart-defects/DS01117/DSECTION=tests-anddiagnosis
7 Ramey, C. (2013). Definition of Medically Fragile. September 4th, 2013. (ARD/IEP Suppliment
Form for Medically Fragile ARDSUPMF).
8 Pope, J., & Latson L. (2011). Congenital Heart Defects: Complications. Retrieved from:
http://www.webmd.com/heart-disease/complications-of-congenital-heart-defects
9 Seattle Children’s Hospital, Research and Foundation. (2013). Heart and Blood Conditions:
Endocarditis. Retrieved from: http://www.seattlechildrens.org/medical-conditions/heartblood-conditions/endocarditis/
10 Mayo Foundation for Medical Education and Research (MFMER).(2012). Congenital Heart
Defects in Children: Complications. Retrieved from:
http://www.mayoclinic.com/health/congenital-heartdefects/DS01117/DSECTION=complications
12 The Children’s Hospital of Philadelphia. (2013). Health Information: Polycythemia. Retrieved
from: http://www.chop.edu/healthinfo/polycythemia.html
13 The Nemours Foundation. (2013). What is Pneumonia? Retrieved from:
http://kidshealth.org/kid/ill_injure/sick/pneumonia.html
14 Mayo Foundation for Medical Education and Research (MFMER). (2013). Pneumonia:
Complications. Retrieved from:
http://www.mayoclinic.com/health/pneumonia/DS00135/DSECTION=complications
15 MediResources INC. (2013). High Blood Pressure: Congestive Heart Failure. Retrieved from:
http://chealth.canoe.ca/channel_condition_info_details.asp?disease_id=223&channel_id=2049
&relation_id=37823
Congenital Heart Disease: Meaghan Barrett, October 9th, 2013
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16 Heart
and Stroke Foundation.(2012). Stroke in Children (Paediatric Stroke). Retrieved from:
http://www.heartandstroke.com/site/c.ikIQLcMWJtE/b.5458215/k.1E7B/Stroke__Stroke_in_ch
ildren_Paediatric_stroke.htm
17 W. B Saunders Company (1998). Polycythemia. Retrieved from: http://web.squ.edu.om/medlib/med_cd/e_cds/Griffith's%20Instructions%20Patients/pdf/Pg377.pdf
18National Children’s Hospital (2010). Light Shed on GI Disease In Infants Born With Complex
Congenital Heart Disease. Retrieved from:
http://www.sciencedaily.com/releases/2010/05/100526111240.htm
19The Nemours Foundation (2013). Necrotizing Enterocolitis. Retrieved from:
http://kidshealth.org/parent/medical/digestive/nec.html
Congenital Heart Disease: Meaghan Barrett, October 9th, 2013
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Conclusion
Creating and researching this booklet has provided me with an amazing amount of new
information. I knew very little about congenital heart disease prior to researching, and had
many assumptions about what could and could not be done medically to treat congenital heart
disease. While I knew that heart transplants were possible, I had no idea of the variety of
surgical procedures available that could provide a child with CHD with a normal, active life.
On the opposite end of the spectrum, I was surprised to discover just how many things
can go wrong where the heart is concerned, especially where a closer look is taken at the
possible complications that can arise for each specific condition. It puts into perspective the
amount of responsibility and stress that parents must face if their child has CHD. I believe this
would be especially true of parents with very young/new born children. While information is
abundantly available, it can also be very over whelming and confusing. Add to this the stress of
having your child frequently stay in the hospital or even requiring home care in some situations,
and I can understand the great need for parental support during these times.
On the same topic, it was encouraging to find many websites that are very “user
friendly”: using plain language to explain different conditions and complications, as well as
having a separate section just for kids. www.sickkids.ca was particularly impressive, with
interactive games and coloring sheets that taught children about the heart and how it works, in
a very fun way! It is supports like this, as well as parental support groups that can make all the
difference when your child is facing a potentially life threatening illness.
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