what is chd?

WHAT IS CHD?

First lets start with What is HLHS?

Hypoplastic Left Heart Syndrome is a Congenital Heart Condition (a problem that a baby is born with). It is made up of a collection of problems on the left side of the heart. Usually, the pumping chamber (Left Ventricle) is small (Hypoplastic) and the Mitral and/or the Aortic valve may be narrow, blocked or not formed at all. The body artery (Aorta) is often small (Hypoplastic) and there is a hole (Atrial Septal Defect) between the two collecting chambers.

The blood’s journey through the heart is very different from normal. The blue (deoxygenated) blood flows into the right collecting chamber (Right Atrium), through the valve (Tricuspid) into the right pumping chamber (Right Ventricle). From there it is pumped up to the lungs where the blood receives oxygen. The red oxygen-filled blood then flows from the lungs into the collecting chamber (Left Atrium) in the left side of the heart, but it will be unable to then pass into the left pumping chamber (Left Ventricle). As the valve will be blocked, it therefore passes through the hole between the two collecting chambers into the right side, where it mixes with the blue blood and follows the normal path to the lungs.

Whilst the Ductus Arteriosus is still open (patent), the blood will pass from the lung artery into the body artery and then around the body. When the duct closes, the baby will no longer have oxygen flowing to their body. Gradually they become sicker and die.

Hypoplastic Left Heart Syndrome is a fairly rare problem that occurs in approximately 1 in 5000 babies and accounts for 1% of all Congenital Heart Disorders.

Absract above from the Little hearts matters site.

Congenital Heart Defects

A congenital heart defect is a problem with the structure of the heart. It is present at birth. Congenital heart defects are the most common type of major birth defect.

A baby's heart begins to develop shortly after conception. During development, structural defects can occur. These defects can involve the walls of the heart, the valves of the heart and the arteries and veins near the heart. Congenital heart defects can disrupt the normal flow of blood through the heart. The blood flow can:

Slow down
Go in the wrong direction or to the wrong place
Be blocked completely

Treatment for the defect can include medicines, surgery and other medical procedures and heart transplants. The treatment depends on the severity and type of defect, a child's age, and size and , and general health. Today, many children born with complex heart defects grow to adulthood and lead productive lives.

Here is a short list of heart medications a brief summery of what they are and why your heart child may need them.

Captopril- Helps with hypertention and congestive heart failure, this medication also helps with heart rhythm.

Furosemide - Diuretic to reduce blood volume.

Hydralazine- This medication is used for high blood pressure. Hypertenstion.

Asprin- Anticlotting effect, Blood thinner to prevent clots in narrowed arteries.

Spironolactone- is known as a potassium-sparing diuretic because, unlike some other diuretics, it does not cause your body to lose potassium.

Heparin- Anticlotting effect. Sometimes you can get a Asprin/heparin mix after heart surgery to again act as a blood thinner.

Plavix- Is used to stop platelets from sticking together and forming blood clots and helps blood flow more easily.

These medications are just some of he over 54 meds that are used to treat congenital heart patients these are the most commonly used medications.

A friend of mine called Hazel who is a GUCH "Grown up with Congenital Heart" showed me this poem which I can relate to so much, that it moved me to tears and I now want to share this with you

CHD poem

What does it mean to be the parent of a child with a heart defect?

It means going into your baby's room a dozen times a night just to check and see if he is breathing.

It means standing over the crib and watching for the chest to rise and fall and when you don't see it move you begin to panic and put your head down close to the baby's face to try to hear him breathe.

It means that when you don't see the chest move and you don't hear the breathing (because your own heart's beating is drowning out any other sound in the room) you put your finger under the baby's nose to feel the warm air on your finger - until you wake the baby and he stirs - and you're thankful so thankful that he's still with you.

It means waking up with a start every morning, jumping out of bed and running to your baby's room wondering why he isn't crying yet? It means feeling a huge sense of relief when he hears you and opens his eyes and smiles, It means saying a prayer of thanks for another day.

It means measuring out his medication and panicking if he spits some of it out, How much did he spit out anyway? 1cc? 2 or 3? And wondering if you should guesstimate how much more he should have and worrying about overmedicating.

It means checking his nailbeds against your own to determine how blue he is today, It means asking your husband, your mother, your sister, "Do his lips look blue to you?"

It means snuggling him in an extra blanket for fear he wont be warm enough.

It means worrying that even a sniffle could cause an infection that would harm the heart.

It means taking your baby to the doctor and then worrying that the baby will get something even worse from being in the waiting room, so it means walking back and forth and back and forth in the corridor until the nurse calls your baby's name and takes you straight back to the examination room.

I means knowing that everyday is a blessing and a gift, it means knowing that you are the luckiest person in the world just to be a parent, It means cherishing every moment, every breath with such an intensity that you feel tears come to your eyes for no apparent reason.

It means praying for a miracle to save your baby's life.

It means praying that your marriage is strong enough to endure the hospitalizations, separations, and the grief.

It means your own heart knows a pain no parent should know.

It means feeling weak and helpless and angry and depressed because your child's fate is out of your hands, It means feeling strong and determined and brave because you know you have to be.

It means your love knows new unlimited boundaries, it means your pride in your child's accomplishments is unparalleled, It means your pain has taught you a deeper sense of compassion and understanding than you ever imagined.

It means we are united by the same feelings, it means that we all know the mixed up emotions of living with death-but more importantly of living with Life.

It means that even though we are strangers we are more to each other than friends could ever be.

TYPES OF CHD.

Types of Congenital Heart Defects

Two of the more common congenital disorders are Ventricular Septal Defects (VSD) and Atrial Septal Defects (ASD). Both are abnormal openings in the wall between the side of the heart that pumps oxygen-poor blood to the lungs, and the side that pumps oxygen-rich blood out to the body.

A VSD (Ventral Septal Defect) is a hole that occurs in the septum, or wall, that lies between the left and right ventricles, or lower chambers.

An ASD (Atrail Septal Defect) is a hole that occurs in the septum between the left and right atria, or upper chambers. In both cases, oxygen-rich blood from the left side seeps into the right side. This decreases the amount of circulating oxygen and puts additional strain on the heart and lungs. A patent foramen ovale, or PFO, is a type of ASD. The foramen ovale is a natural opening that exists between the right and left atria in the fetal circulatory system. The hole usually closes after the infant takes its first breath. If it fails to close, it is considered patent, or open. A PFO does not always cause health problems.

Much less common, but potentially more serious, is a PDA (Patent Ductus Arteriosus). The ductus arteriosus is a normal structure in the faetal circulatory system that allows blood to bypass the faetal lungs, since the lungs are not needed for respiration while the faetus is in the womb. This channel normally closes after birth. If it remains open, blood will flow from the aorta into the pulmonary artery. If the hole is large enough, it may lead to heart failure.

Narrowed and constricted blood vessels
Heart defects can also include narrowed or constricted blood vessels. One of the more common types of vascular defects is CoA (Coarctation of the Aorta). A narrowed or pinched aorta forces the heart to work harder to deliver blood. Eventually, the overload will damage both the heart and the aorta.

Here's a list of some of the 35+ Congenital Heart Defects:

Atrial Septal Defect (ASD)
Atrioventricular Canal Defect
Coarctation of the Aorta (CoA)
Congenitally Corrected Transposition of the Great Arteries (ccTGA)
Ebstein's Anomaly
Hypoplastic Left Heart syndrome (HLHS)
Hypoplastic Right Heart syndrome (HRHS)
Patent Ductus Arteriosus
Persistent Truncus Arteriosus
Pulmonary Atresia (PA)
Pulmonary Stenosis (PS)
Tetralogy of Fallot (ToF)
Transposition of the Great Arteries (TGA)
Tricuspid Atresia
Total anomalous pulmonary venous connection
Ventral Septal Defect (VSD)

SIGNS OF CHD.

Some signs of chd if in an undiagnosed child or adult could be the following:

Breathlessness.

Failing to thrive.

Irregular heartbeats (palpatations).

Blue fingers, toes, lips. ect.........

Heres some pictures of my sons fingers and toes you will also note that they do tinge a little blue not as much as they did before his surgery's, they are also slightly clubbed fingertips and toes classic indication of a cardiac child.

Below is a diagram of how some cardiac's fingers can look a classic sign of a cardiac symtom.

HLHS AWARENESS UK

We will never give up!