Looking after your mental health
Many of the parents we work with tell us that they have, at times, struggled with their mental health. From the moment you find out your child has a heart condition, you will likely feel many emotions – fear, worry, anxiety and anger to name a few.
Looking after a sick child can be hard and you may feel like you’re on an emotional roller-coaster. It is perfectly normal to struggle with your mental health, but there are plenty of people and organisations who can help.
“We barely slept, tending to Maisie and checking her constantly, just to make sure she was ok. When you parent a child with complex health needs, you live in a state of high alert. Constantly on edge about what might happen next. It’s something you learn to manage as time goes on, but it never really goes away” – Jessica.
While caring for your child, remember that it’s important to look after yourself too.
Here are some tips from heart parents on looking after your mental health:
Talk to someone
Don’t bottle everything up. It’s important to talk about your feelings with friends, family and health professionals.
Speaking to other parents of children with heart conditions can be a lifeline. Join our parent and carer Facebook group, where you will find hundreds of heart parents waiting to offer advice and support.
“Tiny Tickers parent group will provide much needed connection with other families, going through a similar experience. Seek these out, they’ll be your go to for information and comfort, way beyond your hospital stay” –
Read about others’ experiences
Almost all the parents we work with tell us that reading about the experiences of others in similar situations helped prepare them for the journey ahead. When you first receive your child’s diagnosis you will probably know little or nothing about their condition(s) and this can make the experience even more frightening. Reading the stories of those who have been there before you can be very comforting and help you feel more prepared.
“I was that new mum, sobbing and googling. In that very moment I came across Tiny Tickers and found comfort in reading people’s stories and seeing there is support and help available amongst a community of other parents” – Jessica.
Thankfully, many parents have bravely shared their stories with us and you can read them here. You can search for stories by condition.
You can also listen to stories from other heart parents on the Little Heart Warriors podcast. This podcast was created by heart mum, Michelle, as a space to “share stories on everything wrapped around a diagnosis of CHD.” She says, “At a time when it can feel quite lonely, we hope this podcast offers some comfort that you are not alone.” You can listen on Apple, Spotify or wherever you get your podcasts.
“I want to share Henry’s story to help anyone else who is on this journey, to let you know that it’s ok not to feel OK. You will, as a heart parent, find strength you never knew that you had. There are amazing charities and support staff out there to help you find a way through what can seem like a hazy path” – Rachael
It’s easy to become consumed by worry and fear and sometimes these thoughts and emotions spiral until you become completely overwhelmed and lost in them. Mindfulness helps bring your awareness back to the present moment.
When you feel anxious, try the 5,4,3,2,1 grounding technique:
Before you start, pay attention to your breathing. Close your eyes and take a few deep, slow breaths. This will help you return to a calmer state. Then open your eyes and look around you.
5: Acknowledge FIVE things you can see around you…
4: Acknowledge FOUR things you can touch around you…
3: Acknowledge THREE things you can hear…
2: Acknowledge TWO things you can smell…
1: Acknowledge ONE thing you can taste…
This will help bring you back to the present moment and prevent your mind from jumping around between anxious thoughts.
Find out more about different mindfulness techniques here.
Your GP may also be able to recommend different mindfulness resources and refer you for sessions.
Expect the unexpected
When your child is sick, you may feel powerless, especially when everything is in the hands of the health professionals looking after them.
“Nasty mother guilt had such a strong hold. Especially, being the control freak I am, everything was out of my control. I was merely a passenger who had to wait to be told what was the best action for Henry” – Rachael
According to other heart parents, you sometimes need to get used to unexpected turns of events and problems that arise quickly.
We are often told that one of the most difficult things a parent can do is kiss their child goodnight as they are given general anaesthesia before an operation. Remember that your child is in the best place, being looked after by experts who have his or her best interests at heart. You are doing the very best for your child and there is never any reason to feel guilty for this.
“The evening before Honey’s surgery, an anaesthetist visited our room. As with all the medical professionals we met that day, I will never forget his face. A very tall, kindly man with a soft, gentle voice – ‘I just want you to know that I will look after her as if she were my own.’ Although comforting, it did bring home the enormity of Honey’s surgery” – Grace
“I had 11 affirmation cards that I had written out and I continuously went through those for the duration of the operation. I fixated on one in particular: ‘Elodie is safe in the operating theatre and I have faith in the medical team’ – Vicky Gooden.
(Read Elodie’s story, where Vicky shares all her surgery affirmations.)
Find creative outlets
Drawing, knitting, journaling – all creative activities can help reduce stress and anxiety. There are plenty of mindful colouring books available – these are especially useful for time spent at hospital. Try and find some ways to unleash your creativity everyday.
Journalling is a good stress management tool, enabling you to clarify and explore your thoughts and feelings.
“I would recommend completing a scrapbook. It was lovely exercise to complete together and helped us all through the experience and to talk about it afterwards” – Jennie.
Ask for and accept help
It’s not always easy to accept offers of help, but remember that your friends and family may feel helpless too. By accepting their offers to babysit, cook meals, do some shopping etc you will all feel better. They say it takes a village to raise a child – this is especially true when your child has a heart condition.
“Whatever happens from now on, I know my extended heart family are going to be there for me, and that makes all the difference. Please know you are not alone. Share and reach out. We’ll be there for each other” – Abbie
Vicki Cockerill knows how challenging it can be to parent a child with a serious heart condition. In this moving blog post, she discusses how heart parents must be aware of the signs and symptoms of mental health problems, as well as knowing that it’s ok to ask for help.
“Don’t lose sight of your mental health. It is important. YOU are important.” Heart parent, Karen Morgan, shares some excellent tips on looking after yourself during tough times here.
“Staring at the fish-filled wallpaper in the children’s outpatients waiting room, I was reminded of a quote from Dory in Finding Nemo – “When life gets you down, do you wanna know what you gotta do? Just keep swimming”. That’s been our approach to life pretty much since the day we were told the devastating news that our daughter Zoe had a life-threatening heart condition” – Jon
The NHS’ Every Mind Matters website has some very useful information and resources about looking after your mental health. You can read it here.
Looking after your mental health during the coronavirus pandemic
During the coronavirus pandemic, you may be worried about your child’s risk of infection and feel anxious about how to keep them safe. Hospital appointments may be cancelled or postponed and, if your child is due to have surgery, it could now take place at a different heart unit and sometimes only one parent at a time can stay in hospital.
With different local and national restrictions in place at different times during the pandemic, social activities and gatherings have been affected and often suspended.
The fear of infection and sense of isolation can put a real strain on your mental health.
You can also read our coronavirus information, which may answer any questions you have during this worrying time.
If you are worried about an upcoming hospital stay, talk to your cardiac liaison nurse and ask other heart parents about their experiences in our support group.
Some of our supporters have shared their experiences of having a heart baby and going for surgery during the pandemic. Reading them may help you prepare for what’s ahead:
Maisie’s heart condition was detected when she was two weeks old and she had open heart surgery soon after – all during the UK’s strict initial lockdown. Read her story here.
Lucca’s heart condition was diagnosed prenatally during the first lockdown and he was born during the pandemic. Read his story here.
Alfie’s heart condition was also diagnosed during the pandemic and he was born during lockdown. Read his story here.
“The support from the PICU staff was amazing, but nothing is better than having your own husband and family around you during such a difficult time.” – Sarah, Alfie’s mum
Roxy was also born during the pandemic. Read her story here.
Acer had open heart surgery during the coronavirus pandemic. Read his story here.
“It was horrible having to split our family up, having to take turns to see our son and not being able to be together before he went under. We hope everything stays positive for at least a few months so we can all recover”-
Bertie’s heart conditions were diagnosed at his 20 week scan. He was born and had surgery during the coronavirus pandemic. Read his story here.
“The period in hospital was full on and stressful, heightened by COVID-19 anxieties and precautions, however the staff in all departments were fantastic and something we will be forever grateful for” – James.
Maternal mental health
Heart parent and Tiny Tickers virtual peer support group facilitator, answers your questions about maternal mental health here.
With thanks to The National Lottery Community Fund for funding our ‘Looking After Your Mental Health’ advice and support for heart families.