We’re supporting Neonatal Mental Health Awareness Week.

The health of parents & caregivers is something we’re really passionate about advocating for (as well as their babies), as self care and well being is crucial for being able to look after a little one. This is even more vital when a baby is born unwell, and in need of intensive care in a NICU (Neonatal Intensive Care Unit) or PICU (Paediatric Intensive Care Unit). Each year, 60,000 babies are born prematurely each year, as well as older infants needing intensive care for other medical reasons – this is a lot of babies, and a lot of families in need of support.

Mental health is something often overlooked, so someone can appear to be ‘fine’ when in fact, they’re seriously struggling and have internalised their feelings. Neonatal Mental Health Awareness Week aims to remove the stigma of anxiety, depression and other issues involving mental health, that parents and relatives of poorly babies often face or even impose on themselves.

We’ve been told that there’s an element of ‘guilt’ – the baby is poorly, and parents/relatives may feel guilty for struggling, then not want to vocalise this in fear of taking the focus away from the little one. Suffering in silence isn’t the answer, and the aim of this awareness campaign is to open a dialogue.

As well as the intense, emotional period of time where baby is in NICU/PICU, the mental health impact can resonate for years after. Family dynamics change, and the work done by medical teams can also have a residual impact on them. A well supported workforce (physically as well as mentally) is far more equipped to support NICU/PICU parents!

“This is why Leo’s wants to campaign, with the support of other UK based organisations, neonatal units and neonatal, maternity & perinatal mental health and allied health professionals networks, for funded and planned mental health support for everyone involved in the neonatal pathway.” Leo’s

It’s ok to not be ok, it’s ok to speak out and tell people that you need support, and it is ok to seek out support for your mental health.

We spoke to parents in our community who had babies in neonatal…

There were lots of very insightful responses to our shout out, most of which highlighted the very real impact a NICU experience has on families, and the clear need to improve support for relatives of poorly babies. It was great to get people openly sharing their experiences, also very reassuring to see that some Neonatal parents feel supported.

Kirsty Hughes: My son was a neo baby! It was a horrible, our nurses were amazing but you still feel so lost.

Beth Squires: I had my baby and she was taken to Neonatal. She was in HDU then transfered to ICU. I really wanted to breastfeed and with her been in ICU by the morning I couldn’t they helped me so much with expressing and stuff but when she came out we couldn’t. I think the support I got was great emotionally too as I didn’t know what was happening she was with us and a few hours later she wasn’t they updated us when we needed it and could go sit with her whenever. I feel after I struggled to bond at first but the midwife and HV helped when we got home as I had PND as I was so devastated I couldn’t BF and I felt like she hated me. But the support was amazing and they couldn’t have done more after she came out of ICU and back to HDU they let me change her and everything and tried to make everything as normal as possible x

Shannon Clark: My son was prem and spent his first few weeks in special care, it was so hard especially having an 11 month old baby at home, didn’t feel like we were given a great deal of support either

Lisa Green: My little girl has Noonan syndrome, she been in picu 3 times in her 3 years of life… its a horrible experience. I do have some anxiety now and we still spend a lot of time in hospital xx

Alisha Howard: I’ve had two nicu babies, in the space of a year. My first was 38 weeks, 10lbs – picked up a heart issue when not in labour & an emergency csection whilst my partner wasn’t there yet, so sudden with very little emotional support. He was taken immediately& I was just left in recovery all on my own, I feel so much more could be done for women in these situations & in those first few hours the women really need to be paid attention to. My second was again full term & suddenly had breathing issues, I think more could be done to keep mums with babies when these things happen instead of separating. I’ve got such bad anxiety since both of their births x

Tasha-Jade Allen: The shock of seeing him in the incubator broke me. I kept feeling like I done something wrong and it was all my fault. I kept everything to myself and it broke me mentally I couldn’t even tell my partner or my parents the guilt I was feeling. 4 months later I had a smear done and swabs just before I had the mirena inserted. It turns out I’m a strep b carrier and that was what most likely my son had been born with. I’d been tested before with my daughter and treated but this time the NHS didn’t fund testing anymore, for something so simple I could of lost my boy, the anger became too much so I decided to put in a formal complaint with the hospital and received an apology from a senior midwife and a new leaflet about diabetic pregnancy and csections has been released in the hospital. I’ll never have closure I always end up in tears but at least I may help another diabetic mum from going through what I did.

Bethany Collings:  The lasting impacts I have are more thankfulness and happy memories, more than any bad or negativity. I think of all the good they have done and safety they’ve provided towards my baby. For without them, I’d be without him here. 

I’m very grateful for what they did. I can’t stay now he’s out of the woods I suffer with mental health, I do when he relapsed but not from his experience there. Without the loving staff, I’d have probably suffered incredibly. They took so much stress off us. Only advice I would give is go at your baby’s pace. Take each day as it comes.

Sammie Morse: Both my boys were premature babies, 31 weeks an 27 weeks. Was hard to watch your baby in a incubator for days on end wishing u could take them home and be able have that special bond like other mummy had. Was harder with my second as I had a 2 year old to attend to as well finding time to go to the hospital as spend time with my other. Was hard but it was all worth it to have 2 all healthy boys.

Kayleigh Marchant-Stewart: We felt heavily judged and treated like we were stupid because we were young parents. I wish they had offered some sort of mental health support as it caused me to go into a deep depression and such severe anxiety that 3 years later I’m still struggling with. It’s ok to feel every emotion under the sun, but don’t feel it alone. Talk to someone if you need to, it will help.

It is ok to not be ok – with the help of Leo’s, we hope to see greater mental health support offered to all on your baby’s Neonatal journey. Do you have an experience that you’d like to share with us to raise awareness? Email [email protected] for more information.

Love from Katie. Xx

COVER IMAGE CREDIT: LEOS CHARITY.