Serious congenital heart defects usually become evident soon after birth (1-6 weeks) or during the first few months (3-6 months) of life. Signs and symptoms could include:
- Pale grey or blue skin colour (cyanosis)
- Fast breathing
- Swelling in areas around the eyes
- Bloated abdomen
- Poor weight gain
- Shortness of breath and sweating during feedings
Less serious congenital heart defects may not be diagnosed until later in childhood, because your child may not have any noticeable signs of a problem. If signs and symptoms are evident in older children, they may include:
- Easily becoming short of breath during exercise or activity
- Easily tiring during exercise or activity
- Fainting during exercise or activity
- Swelling in the hands, ankles or feet
Once you have met the specialist cardiologist, treatment options available for your child will be discussed with you and your family. In a good proportion of cases, a follow up appointment will be organized, as the defect might not need any treatment. In other cases, further tests and scans will be arranged to have a complete understanding of the diagnosis. Once the diagnosis will be complete, if your child will need any treatment, the tests and scans performed will be reviewed by the whole cardiac team, comprising cardiac surgeons, interventional cardiologists, specialist cardiologists and specialist cardiac radiologists, called Multi-Disciplinary-Team (MDT). The MDT meets once a week and all the details pertaining to your child’s condition, including scans and echocardiogram and clinical condition will be reviewed and a treatment plan with timing for it will be formulated. This includes any plan for surgery or less invasive interventions, or just a follow up to allow further evaluation while your child grows. All the above information and plans will be discussed with you in details during a follow up appointment. You will also meet a Cardiac Nurse Specialist who will be able to answer most of your questions and who will liaise with the cardiac team for any further clinical needs.
Most of the Centres around the country offer tours of the unit where your child will be admitted, ahead of the admission, so to familiarise with the Hospital environment.
If surgery has been contemplated, this can happen soon, if the condition requires urgent attention to prevent further deterioration. In this case your child might be kept in hospital for further treatments during the same admission, till the date of surgery which usually is in the following week or so. You will have the chance to speak with all the relevant clinicians and specialists who will look. More often, surgery is planned in advance in the following months; hence your child will be discharged home and will be readmitted at an agreed date for the procedure.
If you child has been diagnosed with a congenital heart defect (CHD) you will be referred to meet a specialist cardiologist in a specialist centre. For a list of UK Centres in the different region networks, please see below:
North Wales, North West, Isle of Man:
https://www.northwestchdnetwork.nhs.uk/
Scotland:
https://www.sccs.scot.nhs.uk/
Ireland:
https://www.olchc.ie/About-Us/News/All-Island-Congenital-Heart-Disease-Network-Conference-.html
North East and North Cumbria:
https://www.networks.nhs.uk/nhs-networks/north-east-north-cumbria-congenital-heart-disease
Yorkshire and Humber:
https://www.networks.nhs.uk/nhs-networks/yorkshire-and-humber-congenital-cardiac-network
East Midlands:
http://www.eastmidlandscongenitalheart.nhs.uk/our-network
London Royal Brompton:
https://www.rbht.nhs.uk/sites/nhs/files/CHD/About%20the%20network.pdf
London Guys, and St. Thomas’ Evelina
https://www.networks.nhs.uk/nhs-networks/guys-and-st-thomas-evelina-london-congenital-heart
Thames valley and Wessex:
https://www.networks.nhs.uk/nhs-networks/thames-valley-wessex-paediatric-cardiac-odn
South Wales and south West:
https://www.swswchd.co.uk/
West Midlands: to be provided