During Maternal Mental Health Awareness Week, heart mum and Tiny Tickers virtual support group facilitator, Abbie Mitchell, answered questions on our Facebook page about maternal mental health, based on her experience as a heart mum and working in mental health peer support. We’ve posted all the questions and answers below and we hope you find them useful and informative.
We know heart parents can have a unique and challenging experience with their mental health. We cannot offer any medical advice and if you would like professional help with your mental health please speak to a doctor or other health professional. Find out more about the people and organisations who can help here.
Q: How did you cope after you found out your baby was going to have congenital heart disease (CHD) during pregnancy? What helped you process the diagnosis?
A: It was a real rollercoaster of emotions. In the immediate aftermath, nothing else in our world mattered. I stripped self-care back to basics and concentrated on food, hydration and walking for exercise, making sure basic needs were met. I took the rest of the day off work and spent time alone with my husband, airing any thoughts and feelings. I found an incredible blogger – Life With Our Heart Warrior, through a friend and then found this charity. Having a community changed things for us and I immediately felt less alone. From then on I took things day-by-day, scan-by-scan.
In terms of processing, it wasn’t linear. On the day, it was very blurry. Professionals were talking to us and it went through but didn’t sink in. Some days felt clearer than others. I took my time to learn and really understand the diagnosis as much as I could before sharing with others. Some people share with their family and friends straight away but I wanted to process my own feelings and thoughts as much as possible before others, as I knew they would also be affected.
Reading from credible sources and stories from Tiny Tickers were super helpful. Repeating questions until I understood and writing things down also helped me process, as well as preparing myself as much as I could by looking at photos of other babies after surgery. I also accessed our hospital psychology service to talk things through, speaking to someone who works specifically with heart parents helped enormously.
Q: Did you get any professional support and was it helpful?
A: Yes, I had support from the psychologist at Great Ormond St (where our treatment was). It was so helpful to have someone who worked specifically with heart families and knew the wards really well. She helped talk through what we could expect and was with us from pregnancy through to surgery. Having someone in the cardiac team was super helpful, as she was aware of the mental health challenges heart parents can have and was better equipped to provide us with information that was helpful and supportive.
Family liaison nurses are also great. I recommend finding out who is available for support during your journey early on, so you can access it if you need it. You can also get help from your perinatal mental health team if you ask your midwife or health visitor (some are self referral). Be sure to follow it up if you don’t hear back too as some systems aren’t as fast as others.
Q: How did you support your other half when it was tough for both of you and how did they support you?
A: My husband and I were super supportive of one another. Initially, we talked a lot and walked a lot. We digested the news together and had similar feelings and thoughts, which made it easier to talk through. We cooked together and focused on the things we could control.
My husband needed distractions now and again, so exercise and work provided with him with a bit of headspace. I needed some routine and people to talk to and so he helped me to do that. He made sure I was eating well. Sometimes the basics can go out the window when things are tough! We made sure we checked in with each other regularly and were understanding and supportive when times were tough. Lots of hugs helped too – especially when they were non existent from anyone else because of the pandemic!
Q: What helped your mental health when your baby was unwell?
A: Having a select few people I knew I could talk to. My husband was incredible, but I also needed someone who wasn’t directly going through it to speak to. Certain family members and friends were particularly helpful and always on call.
Having some sort of routine when we were in hospital, even little things like when we’d get breakfast, go for a walk and rest would help to have something that is ‘constant’ in the uncertain and unpredictable time we were in.
Appreciating the little things no matter how small and tiny wins we had. Humour! Being able to smile and laugh as strange as that might sound to break up the difficult times and allowing ourselves to be occasionally distracted really helped. Having hope, sharing gratitude where I could find it and doing a couple of things that were just for me, helped me for when I was back in the more difficult times.
Q: How do you prepare for having a baby with HLHS? Do we prepare for the best e.g buy all the baby stuff, allow ourselves to get excited about baby’s arrival or do we prepare with caution and not buy much till after the 2nd surgery and try and hold emotions and attachment back?
A: Thank you for raising this. Many heart parents in pregnancy may feel mixed feelings about buying things in preparation for their baby with congenital heart disease (CHD). We can’t answer directly or advise on the specific condition and outcomes, but we do know that lots of people are in a similar boat with how they prepare for their new arrival and will have their own ways of coping and preparing. Some parents might prefer to buy only the very essential items for their baby whereas some will want to buy things earlier to try and have a distraction from the CHD. It’s what feels right for you.
It can be such an up and down time with some days perhaps being more positive and optimistic and other days maybe feeling more nervous and scared. Just know that everything you feel is valid even if it’s difficult to experience.
Everyone copes with emotions differently and some people prefer to keep them in. However, sometimes when we share them with others, it can really help us to verbally ‘breathe out’ a little and often we’ll find that we are not alone with these difficult thoughts and feelings, especially when we talk to others in the heart parent community.
Talking to those in a position similar might give us suggestions that resonate with us on how to cope. That’s why we’ve set up our peer support groups.
How you prepare and whether you buy things for your baby is a personal decision and may be influenced by a number of things, for example – prognosis and the information you have been given and how you feel. There may be unknowns, but I would try to embrace the more positive feelings when you get them if you feel able to where possible, but there’s no right or wrong and everyone is different.
Find out more about looking after your mental health as a heart parent here.
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