Tuesday 7 February 2023

Congenital Heart Defect Awareness Week 2023!

Every year from the 7th to the 14th of February is Congenital Heart Defect Awareness Week. It is here to promote awareness and provides education about congenital heart defects. (CHDs). I am not just jumping on a bandwagon and a cause, I have had first hand experience of heart defects which I will come to in a moment.

Heart with a plaster on

A congenital heart defect results when the heart or blood vessels near the heart doesn't develop normally. It’s the most common birth defect in babies and more than 1 million babies worldwide are born each year with a congenital heart defect. It’s the most common birth defect and the most common cause of infant death among birth defects.

There are several types of CHD. Some of the most common include: Ventricular septal defects, Atrial septal defects, Tetralogy of Fallot (TOF), Pulmonary valve stenosis, Patent ductus arteriosus, Dextro-transposition of the great arteries (D-TGA), Aortic valve stenosis, Single ventricle defects, such as double outlet right ventricle (DORV) and hypoplastic left heart syndrome (HLHS) and some babies are born with more than one defect.

I had a hole in my heart from when I was born and that was discovered when I fell down the stairs and broke my arm when I was about 4 years old. I didn't need surgery.  My girls were born with heart defects too. The girls heart issues were only discovered when Becky pushed a door shut on Ellie's fingers and she needed surgery to fix them. You can read our full story here which I shared years ago.

Both of my girls had Atrioventricular septal defects (AVSD's). An atrioventricular septal defect is a large hole between the upper filling chambers (atria) and the lower pumping chambers (ventricles) of the heart. The hole allows more blood to flow from the left side of the heart to the right. This increases the pressure of the blood travelling to the lungs, making the right hand-side of the heart work harder and function less well. After their heart surgery they were left with leaking heart valves.

Tiny Tickers

Charities like Tiny Tickers want to increase early detection rates of cardiac conditions so they are not missed like my girls heart defects were missed during my pregnancies and when they were new born's. 

The causes of congenital heart defects among most babies are unknown. Some babies have heart defects because of changes in their genes or chromosomes. We have looked into what caused my girls heart defects and nobody knows. It could be a faulty gene from me, it has to be from me as the girls both have different father's or it could just be bad luck. There is no real way to know. The girls can choose to have tests when they were older but I wasn't going to push them into it a few years ago. It is only really going to effect them when they have their own children and then they will be monitored closely.

The CHD symptoms depend on the type of defect in the heart defect but the most common symptoms can include: Bluish lips, skin, fingers, and toes, breathlessness or trouble breathing, feeding difficulties, low birth weight, chest pain, delayed growth and a small size or low body weight, abnormal heart rhythms, dizziness, trouble breathing, fainting, swelling and fatigue.

Before Becky's heart defect was discovered she was really thin and did have blueish lips but we just that down to her always feeling the cold. Ellie showed none of the main symptoms but did sweat a lot as a baby, we know now that it was because her heart was working more than it should have been.

Children with minor heart defects may not need any treatment, some may heal on their own with time but some that have serious symptoms may need medical or surgical treatment within the first year of life. The treatment depends on the type and severity of the heart defect. In these cases, treatment may include the following:

There are various medications that can help the heart work more efficiently. Some can also be used to prevent blood clots from forming or to control an irregular heartbeat.

Implantable Heart Devices.
Some of the complications associated with congenital heart defects can be prevented with the use of certain devices, including pacemakers, defibrillators (ICDs). A pacemaker can help regulate an abnormal heart rate, and an ICD may correct life-threatening irregular heartbeats.

Catheter Procedures.
Catheterization techniques allow doctors to repair certain congenital heart defects without surgically opening the chest and heart. During these procedures, the doctor will insert a thin tube into a vein in the leg and guide it up to the heart. Once the catheter is in the correct position, the doctor will use small tools threaded through the catheter to correct the defect.

Open-Heart Surgery.
This type of surgery may be needed if catheter procedures aren't enough to repair a congenital heart defect. A surgeon may perform open-heart surgery to close holes in the heart, repair heart valves, or widen blood vessels.

Heart Transplant.
In the rare cases in which a congenital heart defect is too complex to fix a heart transplant may be needed.

Regular follow up appointment are needed just to check on the heart, even if the patient has had successful surgery and is leading a very normal life. My girls used to go for a check up every year and at their last appointments Ellie was given 2 years without an appointment and Becky 3 which is real progress. They will have appointments for the rest of their lives because of the way their hearts are. In the past there has been talk of more surgery to fix the leaking valves which they were left with but their valves haven't changed in the last 5 years so surgery may not be needed.

Hearing that your child has a heart condition is devastating but remember that surgical outcomes in the UK are some of the best in the world and the vast majority of babies born with CHD survive into adulthood and live normal lives! Doctors now expect that around 96 percent of people who get a CHD diagnosis and receive hospital treatment will survive.

Have you heard of Congenital Heart Defects before?


  1. Thisiswhereitisat9 February 2023 at 16:14

    This was really interesting and insightful for read. Thank you for sharing your experience x

  2. I cannot ever imagine how scary it must have been for you with both of your girls. My friend's daughter had to have a heart transplant when she was just under two years old. She's now approaching 21 and doing really well. Medical science is amazing. x