When I had my first child, I developed a very serious mental health condition called postpartum psychosis (PP) following a traumatic birth. I spent weeks in a mother and baby psychiatric unit and recovered with medication and months of psychological therapy.
I was carefully monitored and supported during my second pregnancy as I was at risk of developing PP again. It was such a shock when my daughter was born with a serious medical condition. Her large intestine didn’t function at all and she had major surgery at 5 days old to form a stoma.
The plan to maintain my mental health had been to ensure I had plenty of sleep and to minimise stress – both were now practically impossible, as I’m sure many NICU parents know. We were on a children’s surgical ward, so we could stay next to our daughter’s cot. I was breastfeeding and pumping but made sure my husband and I took turns to stay over so I could get uninterrupted sleep.
This was so hard, all I wanted to do was stay with her, but I knew that if I became unwell again, I would be no use to anyone, and it would just add to the family’s stress.
My daughter was in hospital for 8 weeks and had many hospitalisations following that for complications associated with her condition. Even a cold could earn us a 2 week stay. Once she got adenovirus and was in for a month, on intravenous nutrition. It was hard to go out to baby groups knowing she was so vulnerable.
What impact do you think that had on your mental health?
I had to be so careful during that time not to overdo it, I needed my mental health not to suffer. I had to make sure to rest and take time for myself so I could be in the best position to look after my daughter long term. I was very anxious and stressed, but I made sure to reach out to friends for support.
What support did you have?
I had the perinatal mental health team involved, which included a community psychiatric nurse, a psychiatrist and a clinical psychologist. The nurse came to visit me, she was very flexible and came to the paediatric ward as she knew I didn’t want to leave my daughter.
She took me for a coffee when I needed a small break.
We discussed whether my stress felt manageable, and whether I wanted any medication to relieve my anxiety. I chose not to take it as I felt I was coping, and I didn’t like how sleepy it made me.
I was already in touch with a peer support group for postnatal mental health, and the mums there really helped me through. Some of them even cooked dinners and dropped them off for us so we could enjoy home cooked meals. Twitter support from groups like #PNDHour (every Wednesday at 8pm) helped too.
What support would you have liked in your situation?
I don’t think we could have asked for much more! I know some neonatal units have a psychologist who’s available for support, and I think that would have been great. Nurses are very caring but they’re really busy and their primary focus is the babies.
If you had one piece of advice you could give a family going through the NICU journey what would it be?
Things feel so hard right now, just keep putting one foot in front of the other. Focus on the next hour, the next day, the next week. Celebrate the small milestones, and when it feels too much, look back at how far you’ve come. Above all, make sure you take care of yourselves! Your baby needs you, but they need you well, rested, and able to take on the challenges of caring for a sick child. You can only achieve that by stepping away sometimes.
We want to say a very special thank you to Firebird for sharing her story so bravely.