Finding out that your baby has CHD (congenital heart disease) is an incredibly difficult experience. Tiny Tickers is here to help – we provide information to parents-to-be and parents whose babies have been diagnosed, and signpost them to appropriate support services and groups.
If your baby has a serious heart defect it’s important to understand their diagnosis; access the support you need; and know what treatment they are likely to need.
We offer virtual peer support groups for parents of babies with heart defects. Sign up to join a group here.
A diagnosis tells you the name of the condition your baby has. There are lots of different types of congenital heart defect – some will require open heart surgery, some will need other procedures, and some may not require surgery. You can read about some of the most common heart conditions here.
Understanding the particular heart defect your baby has been diagnosed with is very important. You should have seen a specialist doctor when you were given the diagnosis, and they will have explained the condition your baby has. They may even have given you a diagram of your baby’s heart, and some resources. Take the time to read the information you have been given, and get back in touch with your specialist if you don’t understand any of it.
Getting the support you need
When you are told that your baby has a serious heart condition, you are likely to feel all sorts of emotions – such as fear, anger and helplessness. You may find it hard to take in what you are being told.
You should be put in contact with a specialist cardiac nurse, who will be able to talk to you about your baby’s diagnosis and treatment. They are there to offer support and information to you and your family. They may be able to arrange for you to visit your specialist unit before your baby is admitted for surgery (should they need it). They will be able to explain the different health professionals who will help treat your baby, and what their roles are.
Tiny Tickers family support pack
Tiny Tickers has produced a booklet that gives you an overview of what to expect and the advice that parents, who have been through something similar, would like to give you. This forms part of our family support pack. Order yours today.
We have also produced a series of Family Experience Videos in which families share their varied experiences of CHD. You can watch them here.
Tiny Tickers can help put you in touch with other parents who have been in a similar situation to you and we have a parent and carer support group on Facebook. You can join here.
Joseph and Finley’s mums met through our Facebook parent and carer support group. Joseph’s mum, Steph, says, “I commented on one of Louise’s posts about heart surgeries during lockdown. We started talking through Messenger about what heart conditions our boys have and about their journeys so far. We speak almost every day and I feel like I have known her for a long time – she really is lovely and we always support each other during our bad days. It was so lovely to finally meet Finley with his mum and dad. Joseph and Finley were laughing at each other and giving each other kisses – it was adorable. These boys have had a big fight to get to where they are now. It’s amazing the friends you can make on your heart journey. Just someone to talk to and someone who understands what you are going through is so helpful. Thank you Tiny Tickers for bringing our CHD families together. We have made friends for life!”
We have great links with other charities and services who offer support and counselling, and advice regarding specific heart conditions. Get in touch via firstname.lastname@example.org if we can help, and see our links page for some useful contact details.
You may feel you have to put on a brave face for your family and friends, perhaps even for the specialists involved in your care. Or you may welcome the chance to let you feelings show, and draw strength from those close to you. You may want to learn everything you can about CHD, or not. There’s no right or wrong way to go about dealing with such difficult news – the most important thing is that you have all the information and support you need.
We know what it’s like to get that diagnosis. From the volunteer members of our Parent and Carer Panel, to our Trustee board, and also our Chief Executive – throughout Tiny Tickers we have people with personal experience of CHD.
Our Chief Executive, Jon, has written a blog about finding out about his daughter’s heart defect, and what happened next. He says: “With one sentence – ‘I think your baby has a poorly heart’ – everything changed. The blissful bubble of our first pregnancy burst. The world of CHD swallowed us.” Click her to read the rest Jon’s blog post.
Questions you may want to ask your specialist
It can be hard to understand the details of your baby’s diagnosis. You should ask either your doctor or specialist cardiac nurse to explain anything you are unsure about. You may want to ask some of these questions:
What type of CHD does my baby have?
There are a lot of different congenital heart defects, so understanding your baby’s particular condition or conditions is important. You can read some information about the most common conditions here. And this page on the NHS Choices website contains basic information about some heart defects.
What are the treatment options? Is my baby likely to have open heart surgery?
Some babies will need open heart surgery, while others may have a catheter procedure. Some heart defects will require no intervention. We recommend you speak to your specialist so you understand the potential options for you child.
If my baby is likely to have surgery, where will this take place?
Because it is such a specialist area of medicine, there are only 12 paediatric heart surgery centres across the UK and Ireland. You can click here for links to all their websites. Of these, only two centres currently perform heart transplants – Great Ormond Street Hospital in London and the Freeman Hospital in Newcastle. By discussing where any surgery is most likely to take place, and when, you can start thinking about the practical arrangements you might need to make.
How can I find out more about outcomes for surgery?
The website Understanding Children’s Heart Surgery Outcomes helps people make sense of published survival data about children’s cardiac surgery in the UK and Ireland.
If your baby was diagnosed during pregnancy, how will the rest of my pregnancy be managed? What does the diagnosis mean for my baby’s birth?
Many mums-to-be who receive a diagnosis during pregnancy can expect additional scans and checks on their baby during the rest of their pregnancy – probably at a fetal medicine unit. In some cases – depending on your baby’s heart condition – doctors may recommend your baby is induced at a maternity unit near the specialist children’s heart surgery unit. You should discuss plans for the rest of your pregnancy and your baby’s birth with your specialist.
Hearing that your baby has a heart condition is devastating, but please 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.
Many of our supporters have shared their journeys with CHD – pregnancy, diagnosis, surgery and beyond. You can read them all here.