I was recently contacted by a Mother asking me if I had written a post on how to help your child cope with having their sibling in NICU. I hadn’t even thought about this as a blog topic but also couldn’t believe I had overlooked it! Through the emotions, the tiredness, the back and forth to the hospital, I had constantly thought about our baby and writing about his journey yet the other superstar hasn’t had a mention, and he definitely deserves one.
Jake coped so well whilst William was in hospital and he made me so incredibly proud at the time. He is a boy who does take things in his stride and one who can empathise very, very well for such a young child. However, that’s not to say that we didn’t have some upset from him, some confusion and some big asks of him and it was definitely something that we had to be aware of and we knew we had to keep a close eye on him too. So, this is how we approached it all…
Open and honest
As parents, we are both very open and honest about life, death, feelings and so on. Children do need to be protected to some degree, I agree with this, however, I also do not believe in hiding everything from them. In our case, Jake was born into a world with questions regarding upset because my Mum died in 2003. There are photos of her around our home and when the day came for him to ask who she was, I wasn’t going to gloss over the facts, “That was my Mummy, she was lovely but she now lives in the stars”. I explained that she was ill and that is usually enough for a child. Then we lost my Nan in 2016 and I had to explain it all again. However, I have never taken him to a funeral or to the graveyard as I don’t feel that side is needed… this is where they can be protected from reality for a while longer.
Anyway, back to the topic at hand. Jake was kept in the loop during my entire pregnancy, the good, the bad and the hospital bits. He knew that Mummy wasn’t quite right and this geared him up for things going a little differently once the baby arrived. Now, in some respects, we were lucky when my waters broke at 30 weeks. We were prepared for a premature baby which meant we could prepare our older son. I know this isn’t always the case but if you do get some signs or medical advice that prematurity may be on the cards, go ahead and explain what this will mean to your other children before any of it happens. Put everything in simple terms and answer any questions they have. For example:
“When baby arrives he may be a little smaller than he should be”
“He will have to stay in hospital just a little longer than you did because he will need to be looked after by the nurses”
“He is going to come out too early but the hospital will take good care of him to help him get big and strong”
“Mummy and Daddy will need to go up to the hospital quite a lot and you will be allowed too. You will need to be a very helpful big brother and help give your baby brother plenty of love to get him home”
You will need to tailor what you say depending on what term your baby makes it to and what treatment they may require etc. As I say, you can provide them with facts but don’t be too honest, just prepare them.
This technique will need to be continued throughout your baby’s NICU journey because there are going to be bumps in the road, there will be good days and emotional days, tiring ones and stagnant ones. Your child/children will see all of this and I think the only way to help them to understand is to keep informing them. They are apart of the family too and sometimes overprotecting them can cause hidden worry and upset for them.
We were extremely lucky that our NICU unit was welcoming of siblings. I’m sure all units will probably be a little different, but we were told from day one that the only people who could touch William were myself and hubby plus Jake. For Jake, this was a huge honour. We told him that other people couldn’t touch him but because he was his big brother he could, as long as he did it exactly as the nurse showed him. He was over at that sink washing his hands before I had even finished explaining it all! The nurses demonstrated what he needed to do and his eyes were lit up like it was Christmas. It was almost like giving him a big brother responsibility, something only he could do. The nurses knew exactly what to say and how to handle it all:
“you can touch him and no one else can BUT you must be extra gentle and careful so you don’t hurt him but he would love to be touched by his brother”.
From then on, he became very well-known on the ward and the nurses would talk to him, do colouring in with him, ask him to help them whilst I was feeding and so on. They helped him to find the hospital an ok place, a place that was fun and nice to visit and this helped us immensely.
If you can give your child plenty of responsibility during this period it can actually help them to feel included. You may be running around trying to juggle work, school, home, pets, shopping and so on but don’t forget that you are all in this together and to take some time to reflect on what you could all do to help as a family. Older siblings may need to help a little more around the home, maybe walk the dog or do some washing up? Younger siblings could be given the responsibility of drawing some pictures to go on the baby’s wall/incubator/board or to go out and help to pick a new teddy or clothing.
At the hospital, you could give them designated jobs each time they go. Maybe get the water for nappy change, place the expressed milk in the fridge, put clean clothes in the cupboard, tidy up around the incubator/bed or room. Something that makes it all feel as normal as it can and to reduce the medical side.
Jake was transformed into ‘Doctor Jake’ by the nurses at each visit! They made him a name badge which they kept on the wall for him, they let him walk around with a stethoscope on and they even asked him to help with the other baby’s (those who were in cots and out of incubators obviously!) He was known and he was needed and he felt as though he was helping. That responsibility not only made him feel as though he was helping his brother to come home sooner, it also, very importantly, helped him to understand the medical journey, the processes and helped him to come to terms with the whole situation.
Keep a Routine
We didn’t take Jake out of pre-school, gymnastics or stopped doing the things he loved because the period that William was in hospital was already life-changing enough and we didn’t need to add to that. I made sure that we stuck to our daily routine and fitted hospital visits in as and when I could. I know this isn’t always possible for everyone. I know some hospitals are miles away from your home, that transport is tricky, that childcare is hard to come by but if you can continue with school or nursery and some of their favourite clubs, you will be helping them to feel as though they are still thought of during this difficult time. If your preemie is going to be in hospital for a very long time, it is best to work out a new routine that will work for everybody as a family. That may mean Mum does the drop-off and Nan does the pick up, or Dad leaves work a little earlier to take over from Mum at the hospital. You may need to rely on friends for after school club collections or you may have to hire a childminder for a short period of time. What you want to do is eliminate further upset by keeping things as normal as they can be in such a situation. It’s exhausting, I know. I only did it for 3 weeks but as I did it all myself (hubby couldn’t get more time off) I never really knew if I was coming or going. Once you get into a rhythm it does become manageable and it makes it all so much better once you get to know the hospital staff and other parents on the ward.
Keep a Diary
This is a great way to get their feelings down and to reflect on what is happening. Jake was a little too young to do this but I had a notepad on me at all times so I could document what was going on. I know not all children will be able to write perfectly but just getting a few words written, some pictures drawn, maybe a spider diagram or feelings faces to circle can be very therapeutic.
Reassurance and Cuddles, lots of Cuddles…
They are still your baby/babies and they need cuddles as much as your preemie does. If you feel as though you’ve had a rough day in NICU, imagine how some of these emotions must rub off on them too. Children are very sensitive to feelings within the household and Jake takes a lot on his little shoulders has been known to keep that locked in until it all becomes too much and the tears come. He was so strong in those weeks but he often thought that Mummy was going back into hospital and staying there (I had been in a couple of times with PPROM) and he was anxious that the baby wouldn’t be home for a long time or that he may end up back in there. So, in the evenings we took time to reflect. Bedtime was a great time for us because it would just be me and him, sat on his bed, no distractions and both chilled. He opens up when he’s there and he likes to ask questions that may have played on his mind during the day or popped back into his head. I think it’s his way of rounding up events and then being able to sleep soundly without anything troubling him. I would take this time to reiterate anything from the day, to further explain anything and to answer any questions. Then we would cuddle so hard so he knew he was still very important, so he knew that we were strong as a family and that nothing could change that. I needed those cuddles as much as he did.
Finally home after all my hospital stays
I’m not going to lie, it was emotional and hard for all of us and yet I know three weeks is nothing compared to what some families go through so I also understand that each circumstance is different and everyone needs to do whatever they can in order to get through it all. By helping your other children to come to terms with the events and to fully understand everything can really help you in some way too. Having to talk things through, answer their questions and reassuring them can be extremely therapeutic. They can also be a great distraction… Jake could still make me laugh on the worst days, they just know how to do it, don’t they?!
I hope some of these tips have helped. I hope your NICU journey isn’t too long and I hope you can gain the support you need for your entire family.
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