Finding out your baby has a heart condition (whether during pregnancy or after your baby is born) can be a very traumatic experience. Your journey may include some frightening and distressing events, which can leave a lasting impact. Everyone has a different reaction to trauma and you may find you are affected in different ways to your partner.
“This is earth shattering, this is traumatic. You feel lost, scared and angry, I know.”
You may notice the effects of trauma right away but it can take years to fully comprehend the harm caused by traumatic events.
“All that happened, took its toll. Even now, walking into a hospital or even a heavily sterile/bleached house makes me slightly feel faint. But I developed my own coping strategies, and formed small support networks with other parents. It might feel like some days the walls are caving in and you are being smothered, but there is laughter, hope and some amazing nurses who go out of their way to help you and your family get through a rough time.”
The effects to trauma can include:
- Shock and denial: immediately after the event, you may feel stunned and dissociated with what is going on around you.
- Flashbacks: reliving the traumatic events and feeling the same sensations in your body as you did at the time of the event. Flashbacks can happen at any time, even when you’re thinking about something else entirely. They can also be triggered by a certain noise, smell, sight or memory.
- Sleep issues: you may find it difficult to fall and stay asleep and may suffer from nightmares.
- Panic attacks: the physical symptoms of a panic attack can differ but may include a racing heart, shaking, sweating, feeling sick and a pain in your tummy. Find out more about panic attacks here.
- Anxiety: you may constantly feel anxious and ‘on-edge’ – as though you are waiting for something bad to happen.
- Guilt: some parents tell us that they feel guilty because their child has been through so much and they felt powerless to help.
- Poor concentration
- Change in appetite
- Memory problems
- Withdrawing from others: pretending everything is ‘fine’.
If you are experiencing these or any other effects of trauma, it’s important to speak to your GP or another health professional. You may be suffering from post-traumatic stress disorder (PTSD) or another condition.
“Having a baby with an undiagnosed heart defect, going through a NICU stay and watching him go through surgery at just 6 months old and fearing for his life was like tumbling down a rabbit hole. One that was full of darkness, fear and trauma. It took nearly two years to claw my way back out of that hole and four years on I am still haunted by it.”Vicki
It’s important to talk to your family and friends about how you are feeling, as well as speaking to your GP or a health professional.
Speaking to other heart parents can be a lifeline. Our Facebook parent and carer support group is a very supportive community of people who have been there too. If you don’t use Facebook, we have a database of parents we can connect you with. Get in touch by emailing firstname.lastname@example.org.
“Amaya was moved to another hospital for her operation. Again, this was a traumatic experience due to the risks involved. Amazingly, the eight-hour operation went well, and she made a quick recovery.”
With thanks to The National Lottery Community Fund for funding our ‘Looking After Your Mental Health’ advice and support for heart families.