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Congenital heart disease (CHD) is an umbrella term used to describe any heart condition or defect that develops in the womb, before a baby is born. It affects around 1 in 125 of all live births and accounts for 25% of all birth defects.
There are many potential causes of CHD, however usually these are down to complications in the early development of a foetus. Many causes are unknown - as with Molly. However family history and other conditions can play a part also. Ultrasound scans during pregnancy (usually at the 20 week scan), can be an effective way to detect a congenital heart problem early on. However, in Molly’s case, it was not picked up at any of her 14 scans performed post 20 weeks. Sometimes CHD is not found until after the baby has been born and in other cases, some conditions may not be discovered until the child is older or even an adult.
Because every child and condition is different, CHD in babies and toddlers can have a range of symptoms. The most common symptoms include extreme tiredness, poor feeding, excessive sweating, rapid heartbeat, breathing problems, chest pain and a blue tinge to the skin. In Molly’s case, it wasn’t identified by professionals until 10 months of age despite us presenting her most weeks with these symptoms.
We’d encourage anyone with similar repeated symptoms to push for an echocardiogram through their GP as a matter of urgency.
Around 17,000 babies, children and adults pass through the Leeds Congenital Heart Unit at Leeds General Infirmary each year. Around 400 of these have open heart surgery each year. Molly was one of these 400 and we were very fortunate to have surgery at LGI within 2 months of diagnosis.
We’re looking to raise funds for The Children’s Heart Surgery Fund. Molly will be taking part in her first charity fundraising event on Sunday 10th September 2023. We’ll be taking part in the 1km Superhero walk with the CHSF in Leeds. We need to raise £50 as a minimum.
This charity provide accommodation to parents within the hospital, funding for cardiac nurse specialists, family support workers and play specialists. They secure funding for ECG machines and other medical equipment, palliative care training, and a teddy, medal and certificate for every child. There are grants, counselling and support services also available with them.
We met so many families in Leeds that had gone through multiple operations. Molly is currently having heart scans on a monthly basis and we’ve accepted it is likely we will need to return at some point in the future also.
Thanks for taking the time to read.