CHD Awareness Week: Theo’s ‘broken’ heart


Theo was born with congenital heart defects. He was never diagnosed with any, not even one, at my anomoly scan (20 week scan) and nothing was picked up until he had an echocardiogram (heart scan) postnatally at just 3 days old. During my pregnancy I had been told that my baby was in great health and at every antenatal session with my midwife she would always say how he had such a strong little heartbeat after listening to it with the doppler. All throughout my labour Theo had an amazingly calm and steady heartbeat and in the moments after he was born his heartbeat check also came back as being perfect. After being postnatally diagnosed with Down Syndrome 5 hours after his birth we were immediately rushed to another hospital and booked in for a routine heart scan; typically people with Down Syndrome will have a heart problem 50% of the time.

At the hospital we all suspected he was the lucky 50% without any heart issues as he had showed such positive signs in terms of his heart so far. I will always remember standing in that tiny hot neonatal room overlooking the NICU watching his heart appear on a screen right in front of me. There on the screen was his heart, his chambers flapping apart inside, not like they were supposed to. I remember how the doctor looked at me and said “didn’t they pick up anything at your anomoly scan?” with a shocked expression covering his face.  I will always have that image and those words stuck in my head, the moment I knew he wasn’t okay, the moment every person, every parent dreads. He scanned his heart for over an hour whilst double checking what else could be wrong with it as I stood in silence, holding my babies hand and trying not to cry before the doctor had even confirmed my suspicions. After he had stopped scanning his heart and the red and blue lights had stopped eratically highlighting the issue, I turned and said to him “there’s a problem isn’t there.” He calmly confirmed my concerns and then began to explain to me the extent of his problemthrough different diagrams. I was distraught that there was one, let alone more.

Theo was diagnosed with a complete AVSD, a PDA, a PFO, a CoA, pulmonary hypertension, leaky right and left valves and a narrowing of the miteral valve and future heart failure if he did not have surgery in the near future. Theo was immediately referred to a cardiologist and our regular hospital appointments and heart journey began along with everything else. I was told to monitor him constantly for any signs of heart failure from the day he was diagnosed with his CHD’s.

February is heart month and from the 7th to the 14th is congenital heart defect awareness week with the 14th being the official awareness day for CHD. My little boy is currently in hospital with heart failure trying to avoid the inevitable till he is big enough and strong enough for his operation. The point of this post is to help shed some light on CHD’s and I thought the best way to do that was by explaining Theo’s as best as I can. However, people should be aware that although Theo has many problems with his heart there are many other types of defects that are important to be aware of.

Complete/Full/Total Atrial Ventricular Septum Defect (AVSD)

An AVSD, previously known as an endocardial cushion defect, occurs from faulty development of the atrioventricular cushions in the embryo. These are a subset of cells that are vital for the correct development of the heart wall. These cells develop on the atrioventricular canal. The heart first starts as a tube before it begins to undergo changes that will ultimately and typically form the four chambers of the heart. When an AVSD occurs this means the person is left with holes between the left and right heart chambers. This allows oxygenated blood and deoxygenated blood to mix together as there are no chambers separating the different blood. The result often is that there is too much blood being pumped into the right side of the heart. This blood then has to flow into the pulmonary artery towards the lungs. Symptoms of AVSD without a heart scan or antenatal scan are a bluish tint to the babies skin, feeding problems as they get tired easily from the heart having to pump harder, chest infections and poor weight gain. AVSD is the most common heart defect children with Down Syndrome are usually affected by. Extremely uncommonly Theo did not and has not presented a heart murmur. This is mostly unheard of in a child with AVSD and other CHD’s, however Theo continues to be unaffected by one.

Patent Ductus Arteriosus (PDA)

The ductus arteriosus is a blood vessel that connects two major arteries, the aorta and pulmonary artery. These arteries in a fetus in the womb help to carry blood away from the growing fetus, this is because a baby does not breathe in the womb, therefore not needing use of their lungs yet. A baby in the womb gets its oxygen from the placenta. When the baby is born and begins to breathe with its lungs the ductus isn’t needed anymore and typically is supposed to close within 2 days. However, when the ductus does not close this is known as a PDA. This means that blood rich with oxygen is being allowed to mix with oxygen-poor blood. As a result too much blood begins to flow into the pulmonary arteries. A PDA is most common in babies with Down Syndrome as often they are born with respiratory distress syndrome. The second most common cause is when a baby has been born early or prematurely as sometimes their bodies can’t close the ductus as they weren’t ready to and aren’t strong enough. A PDA isn’t always a negative outcome as amazingly it can help some other heart problems a person may be diagnosed with.

Patent Foramen Ovale (PFO)

A PFO is a hole between the left and right atria aka. the upper chamber of the heart. This hole is one that also exists in everyone before birth just like a PDA. This hole usually also closes after birth. This hole only gets its name PFO if it has failed to close after birth. This hole allows blood to go around the lungs. In about 1 in 3 people this hole does not close. So there are many people walking around unknowingly with a PFO. The cause of a PFO is unknown and typically doesn’t pose any threats or risks unless you were to go deep sea diving. This is because the build up of pressure can cause a blood clot which will lead to a stroke under water.

Coarctation of the Aorta (CoA)

As discussed before the aorta is one of the major arteries. A coarctation is when there is a narrowing at some point. This means that somewhere in Theo’s aorta he has a coarctation. When a CoA occurs the defect affects the bodies circulation of blood as the heart has to pump harder as the artery is constricted, placing a strain oo the heart’s left ventricle. This is the chamber that pumps blood to the aorta and out the persons body. (In Theo this would be his non-existant chamber as he has complete AVSD. Oh little man…) The CoA can occur anywhere in the aorta and can affect it mildly or completely. Boys/men are most commonly affected with a CoA. Symptoms of a CoA include an abnormal blood pressure test, a heart murmur and weaker pulses in the groin area. Surprisingly Theo’s pulses are very strong! Theo just wants to show his CoA whose boss!

Pulmonary Hypertension

Pulmonary Hypertension is when there is raised blood pressure within the pulmonary arteries. These are the blood vessels that supply blood to the lungs. It is a very serious medical condition and can seriously damage the right side of the heart. This means that it makes the heart less efficient at pumping blood which means the muscles begin to lack oxygen. I am very thankful that currently Theo has very mild pulmonary hypertension. When you have PH it often means that your arteries are thick and stiff thus making it difficult for them to expand. The reduced blood flow starves the muscles of oxygen meaning the right side of your heart can’t pump efficiently. As well as hindering blood flow it the thicker walls can often cause a blood clot. In the UK around 6000/7000 people are affected with PH. Many more go undiagnosed…

Leaky Heart Valves

Theo’s right and left heart valves are mildly leaky. A leaky heart valve is when the heart squeezes blood and pumps it forward however some blood will leak backwards and through the valve. When it leaks through the valve this is also known as valve regurgitation. The heart has four valves. These are the aortic, pulmonic, mitral and triscupid. Each valve typically has 3 flaps except the mitral which has 2. Symptoms of a leaky valve include a heart murmur, shortness of breath; especially when lying flat, rapid heartbeat and fluid retention.

Mitral Valve Stenosis (Narrowing of the Mitral Valve)

A mitral stenosis is when the valve is not opening correctly. This then blocks the blood flow into the main pumping chamber (once again at the moment Theo has one giant one) of your heart. This will cause the left atrium to enlarge as a result from pressure and volume. Blood clots can also form from the narrowing, causing heat failure or a stroke. Symptoms of mitral stenosis include extreme fatigue and shortness of breath. Typically if a baby is not born with mitral stenosis it often develops after a person has had an infection called rheumatic fever.

Heart Failure

As I am a writing this I am currently sat in hospital with Theo who is currently in heart failure. The words heart failure are very daunting words and yes, heart failure is eventually fatal. However, it can be stabilised till operations are a possibility. They are currently attempting this with Theo. Heart failure is a condition caused by the heart when it fails to pump enough blood around the body at the right pressure. It Normally happens when the heart becomes too weak and stiff to work properly. Theo currently has congestive heart failure. This is where Theo has developed a large left-to-right shunt causing his CHF. Symptoms of CHF are excessive sweating, poor feeding, blue tinges, tachycardia and often x-rays and scans are done to confirm fluid on the lungs causing congestion and an enlarged heart. If not treated with medication and later an operation, heart failure will be inevitable and fatal.

. A congenital heart defect is a problem in the structure and make up of the heart present at birth

. 1 in 100 babies are born with a heart defect

. A heart defect is the #1 most common type of birth defect

. There are approximately 35 types of CHD’s

. Heart defects are managed througmedicine, devices and/or surgery

. Approximately 25% of babies born with a heart defect need corrective surgery 

. CHD’s are the number one killer in newborn infants, killing twice as many children diagnosed with cancer

. The majority of doctor’s believe a heart defect is genetic

. In the UK an average of 12 babies a day are diagnosed with a CHD






2 thoughts on “CHD Awareness Week: Theo’s ‘broken’ heart

  1. I was born with complex transportation of the Greater arteries and pulmonary stenosis also they have just discovered that my mitral value never formed properly I’m now in heart failure and awaiting a heart transplant I wasn’t estimated to live past 3 years old I’m now 36 because I had the best consultants and the best mum ever she did not always agree with the consultants some of the treatments in the 80s left kids worse off so my mum had to go with her instincts at what was best for me I’m alive today because of those instincts it’s harder for the parent than the child they have to watch us go through the surgeries and painful treatments we just deal with it were very resilient that way but I had a great family and friends that’s what makes the difference my mum was my rock we faced everything together head on and never gave up its as he gets older the harder it will get the discrimination no one would employ me when I left school my home felt like a prison then I met my husband and my life improved I have two beautiful daughters even though I was told my heart might not be strong enough I did it with alot of support from my consultants and family so I face the transplant with a great resource to live and that’s the secret having something to keep fighting for when I was a kid it was for my mum and brother now it’s my mum brother husband and my daughters so keep strong your strength gives him strength never let him see you upset or giving up our parents love strength and faith in us is what keeps us going keeps us fighting

    Liked by 1 person

    1. That’s absolutely amazing everything you have been through! I recently found out through surgery he had other things going on too! I hope to God not just for your children and husband but for you that you get your heart transplant, and I wish you all the luck in the world.! Keep raising those doctoes eyebrows, much love to you and your family, us heart families always needs to stick together x


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