TRIGGER WARNING: THIS PIECE may be triggering if you are on your own nicu journey. THIS ARTICLE IS BASED ON sam’S personal EXPERIENCE OF nicu BUT IT’S IMPORTANT TO REMEMBER THAT EVERYONE’S JOURNEY IS DIFFERENT. PLEASE TAKE CARE WHEN READING AND IF YOU NEED FURTHER SUPPORT PLEASE REFER TO OUR URGENT WARNING. THIS CONTENT IS FOR GENERAL INFORMATION PURPOSES ONLY AND IS IN NO WAY A SUBSTITUTE FOR MEDICAL ADVICE OR TREATMENT. YOU CAN SEE OUR FULL DISCLAIMER HERE.
The Neonatal Intensive Care Unit is a part of the hospital that parents don’t typically foresee their baby going to. In my experience, it’s not something that is regularly discussed during antenatal appointments or classes, and so for some parents, they have no idea what the NICU is all about. I am often asked how someone can support loved ones that have a baby on NICU. Once again, this isn’t something commonly discussed and it’s an area that I love to talk about, in the hope that people have a better idea as to how they can offer their support.
Here are my 10 ways to support parents through the NICU:
- Ask BOTH parents how they are feeling. Yes, mummy has just given birth, but dads are often torn between being there for their partner or baby/babies. They witness a lot, and I remember from personal experience, that people didn’t often ask my husband how he was feeling. We had discussed before our son was born that he was to follow our son wherever he needed to go, but that meant he also had to leave me behind for a couple of hours shortly after I had given birth.
- Comparing one family’s circumstances with another isn’t helpful for the parents that you’re trying to support. Babies are in NICU for such a wide variety of reasons. Just because one baby reached a particular milestone to be discharged from NICU, it doesn’t mean another baby will be the same. All NICU babies need to be thought of as individuals.
- Don’t bombard parents with calls and messages looking for updates or news. I remember receiving so many messages from friends and family, all with the best of intentions, but I found it overwhelming, particularly when there was no change to our son’s condition. Parents do appreciate hearing from loved ones, but simple messages offering love and support rather than asking questions go a long way.
- Food deliveries in any capacity will be greatly received. My husband and I would spend all day in hospital, typically from 9am – 7pm, and we were forever stopping off to buy ready meals on the way home. Looking back, I wish I had made more of an effort to eat properly, especially as I was on a strict expressing schedule. It is so easy for parents to forget to look after themselves.
- Be aware that when parents can take their baby/babies home, they don’t automatically forget all that they have endured in NICU. Parents, including myself, can feel like they are ‘the lucky ones’ as they were able to take their baby home, knowing that some babies don’t get that chance.
- Listening to parent’s feelings about having a baby on NICU is so important. It’s all well and good asking how they are but letting them know that you’re offering a safe space to unburden themselves of any feelings will really go a long way. I found myself bottling up a lot of my feelings during that time, as I think I was unsure if those feelings were normal. But all feelings around the NICU are normal.
- So, for anyone who hasn’t experienced NICU personally, it can be difficult to understand why parents find it to be a tough experience. I found it particularly tough to comprehend that I would be discharged before my son. I would leave hospital, having given birth the day before, but without my baby. I hadn’t considered that I wouldn’t be able to pick up and cuddle my baby whenever I wanted to. We had one cuddle a day for the first few weeks and just like going home without him each day, not being able to hold him all the time felt incredibly unnatural and heart breaking. There are a lot of assumptions that NICU parents are therefore able to ‘sleep through the night’ because they have ‘babysitters’ for that period of time, but I can assure you, we would all much rather have our babies at home with us.
- I have spoken to several NICU parents before about comments they have received from loved ones that perhaps haven’t been taken in the way in which they were intended. Sentences that begin with ‘at least’ seem to be the comments that parents dislike the most. I can totally appreciate why people use this phrase: they are trying to comfort parents and reassure them of silver linings. But I believe that these comments can feel quite dismissive of the parents’ feelings.
- I felt riddled with guilt whenever I wasn’t by my son’s bedside. But, having thought about it now, I really should have taken more time away from the ward. Ask the parents to meet you for a walk around the hospital grounds or for a coffee/lunch in the hospital café. For me, by remaining within the hospital complex, it reassured me that should I be needed, I could be back with my son within minutes. It’s important for parents to take time out and look after themselves but it’s so difficult to overcome the guilt that comes with not being with your baby.
- The last thing we wanted to do when we came home late from hospital was to do chores. We had people offer, but other than having our laundry done by my in-laws, we never took anyone up on their kind offers: we should have!
I hope that anyone reading this will find it useful. It’s important to remember that all parents will feel differently about having a baby on NICU. There is no guidebook on how we are to react to that situation – there is no right or wrong way – parents can feel however they feel about it.