Tuesday 11 February 2020

Congenital Heart Defect Awareness Week 2020

We're in the middle of Congenital Heart Defect Awareness Week and every year I like to write a blog post raising awareness of CHD's. 

My girls were both born with heart defects which weren't discovered until Ellie jammed her fingers in a door and needed surgery. I shared our story a few years ago. They both had open heart surgery over 10 years ago and at the moment they are fit and well. They had their latest check ups late last year and they both still have leaking valves.

Congenital heart defects (CHDs) are an abnormality of the heart which occurs soon after conception and often before the mother is aware that she is pregnant. The defects can range in severity from simple problems, such as holes between chambers of the heart to very severe malformations, such as complete absence of one or more chambers or valves.

Most congenital heart defects develop when a baby is still in the womb. Researchers aren't sure exactly what causes defects to begin, but medical conditions, medications and genetics may play a role. 1 in every 125 babies born in the UK has a heart defect.

CHDs are present at birth and can affect the structure of a baby’s heart and the way it works. They can affect how blood flows through the heart and out to the rest of the body. They can vary from mild (such as a small hole in the heart) to severe (such as missing or poorly formed parts of the heart).

Many doctors believe that CHD’s are genetic, although most people know nothing of Heart Defects till they have a child born with one

Around half of babies with congenital heart defects are diagnosed during ultrasound scans given to mothers while they are pregnant. Some are not detected until after birth or later in life, during childhood or adulthood. If a healthcare provider suspects a CHD may be present, the baby can get several tests (such as an echocardiogram) to confirm the diagnosis.

Signs and Symptoms.

The CHD symptoms depend on the type of defect in the heart and 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.
Trouble breathing.

My girls really didn't show any of these to an excess. Becky my teen was always thin but it was put down to that's how she was and Ellie was always sweating, even on the coldest of days she would be dripping.


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 go for check up's every year/eighteen months. This won't change. They will have these appointments for the rest of their lives because of the way their hearts are. In the past there has been talk of more surgery but to fix their leaking valves but it won't be for a long while yet.

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.

Just let it sink in that Congenital Heart Defect's (CHD's) are the most common birth defect's in the UK! If you don't know someone with one, eventually you probably will!


  1. I'm glad your girls are doing so well, it was so lucky the way you found out. My girl was not born with CHD but has to be checked regularly as she has a condition which can cause heart defects as she grows. x

    1. If it wasn't for the accident one or both of them wouldn't be here now.
      I hope your girl doesn't develop a heart defect x

  2. So glad that Becky and Ellie are doing so well. It must have been such a worry at the time. Well done for raising awareness. Big hugs to you all xx

  3. Thank you for sharing your story and for all this information. I am glad to hear that your girls are fit and well. #MMBC

  4. Wow! I am so glad to hear that your girls are doing well; I had no idea that congenital heart defects were the most common birth defects.