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What not to say to a parent whilst their baby is in the NICU

I am by nature a very romantic person. I always dreamed of my big white wedding and having 3 kids. 2 girls 1 boy. I dreamed of everything just short of a white picket fence. Now being a grown up I knew that life isn’t like a romantic movie and we don’t always get everything that we dreamed of, somehow though I always thought that certain aspects of each dream would come true.

I always wanted to spend time getting the nursery ready for my child and having all of my family together for my baby shower. I had visions of leaving the hospital loaded with my gorgeous wee baby, multiple balloons and gift bags that eager and generous family and family had brought with them to visit my cherub. Coming home to a full house decorated with balloons and bunting to celebrate this new tiny life we had brought into the world. As with any mother to be, I also had my birth plan already in my head waiting to discuss it with the midwives. Turns out the universe had other plans for this girl who lived in a romantic bubble. After 10 years of various fertility treatments we finally conceived who would turn out to be our 2 wee miracle babies. After a very complicated pregnancy. The boys were thrown into the world at Just 25 weeks gestation. I always joked that I had to wait 10 years for them but the wee to-rags couldn’t wait 9 months on me. I had to leave the hospital 3 days after their birth with no babies, no car seats, no flowers, no balloons, no gift bags, no full house, no decorations and certainly no celebrating. My heart was broken, I didn’t want to leave my boys behind in the hospital. I wanted them to be with me, I was their mother and they should be with me and my husband. After the boys fight in the NICU they finally came home. Yet still no balloons etc. They didn’t even come home on the same day. It was as if the world had made it its mission to turn everything upside down.

Throughout these months there were many comments made to me and I can guarantee you each and every single comment came from a good place. A place of love and compassion. It’s just as humans our words tend to fail us at times of worry and grief. So either the wrong thing is said or worse. Nothing is said at all.

So I have compiled a list of things that you should never say to a parent who’s child is in the NICU. This list is not exhaustive by any means, if there is anything you feel that should be added then please feel to leave a comment and tell me what else should be there.

  1. At least he will be smaller for longer and you get to have a cute newborn for longer than other parents.’ I genuinely didn’t know how to respond to this one. But I could tell you one thing. I’d have given anything to have my boys born at a regular newborn size. That would have meant my boys were born at term and most probably healthy.
  2. ‘Oh, they just couldn’t wait to meet their mummy and daddy’ now as I said earlier, I have joked about the 10 years 9 months ratio before but really until you have watched your baby turn blue because they don’t know how to breathe by themselves yet then you will never know how hard it is to hear. They are basically saying your baby chose to fight for his life so he could just nip out and say hello.
  3. “You can’t keep wrapping them up in cotton wool’ Boy I heard this Time and Time again. Especially in the early months when the boys were on oxygen, now it seems to be rearing it’s ugly head again now they are nearly 3. As with any parent I will always put my children first. Yet people seem so shocked when you change plans at the last minute due to the wee ones being sick or refusing to go to a party where there are sick people just in case my boys get ill. If I hear one more Time ‘it’s just a cold’ I swear I will scream. “Just a cold’ could lead to breathing issues such as RSV, which could lead to my boys being incubated with a machine breathing for them, which could lead to death. So no, to a preemie mum, there is no such bloody thing as ‘Just a cold’
  4. “Don’t worry, everything will be ok’ As with most comments on this list, this is said from a good hopeful place. That being said they can also brush aside the very real fears that parents face. Nothing can prepare you for the first time you see your precious little bundle with more tubes coming out of their body than you thought could ever be possible.
  5. ‘I take it you are breastfeeding?’ This one was a very sore topic for me. I felt like a big enough failure that I couldn’t get pregnant without help, then I could make it full term, but to then be told I was not allowed to breastfeed after the nurses made such a big deal to tell me how important it was for my sons that they be given breast milk just made me feel so so low and like the biggest failure ever. I thought maybe I wasn’t supposed to be a mother after all. I still feel tremendous guilt over this to this day. I know deep down that a fed baby is best. I also opted for donor breast milk to give my boys the start I felt they deserved. I didn’t want them to be punished for my failures. It will take a very long time, if ever for me to completely forgive myself. So please, don’t ever just assume. Unless you know the circumstances, don’t ever just assume.
  6. “Wow, 1lb 7 and 1lb 11? You must have just sneezed and they popped out? You are so lucky you didn’t have to give to birth to 2 full size babies!’ I still find it difficult to see this comment as anything other than insensitive. Actually, this comment makes me want to scream. WTAF?????
  7. “At least you got to miss that really big uncomfortable stage’ I would have given my right eye to be big sore and uncomfortable to stop my boys from know the pain of needles and tests before they knew the touch and cuddle of their mum.
  8. “At least you get to go home and get a good night sleep.’ You never want to leave your baby in the hospital but sleep? Hell, when or if I ever get a good nights sleep again I will let you know.
  9. “When will the boys be normal and catch up with other kids their age?’ What is normal anyway? How dare you say my boys aren’t normal. Like any child they will do things in their own time. I will love them unconditionally no matter what their developmental age is. There are no crystal ball, NICU babies progress over the years at their own rate. The fact that they are alive and breathing is miracle enough. They will reach their own milestones in their own time.

10.Thank god that is over and done with.’ We are nearly 3 years down the line now and our journey still isn’t over. Many people assume that once baby is home that the NICU is a distant memory. However, many preemie babies are often left with long term health difficulties. Some of these will resolve over time, but many can be life long complications. The boys are at this stage just now. Many people feel they should be just like their peers and I have even been told to my face that the boys aren’t anything special. They are children and all children are special. I agree all children are special but not all children have had to face the uphill battles like my boys so yeah my boys are god damn special. We will be dealing with health issues due to their Prematurity for many more years to come if not forever. Our lives have been changed so much by having the boys and the likelihood is we will need to adapt and change our lives to suit our boys forever. Do you know what? I wouldn’t change the boys for all the tea in China.

Instead maybe say congratulations, celebrate the birth of a new life. Don’t be scared to do this because you fear the wee baby might not make it. As true as it is that not every baby makes it home from the NICU it is important to remember that every baby deserves to be celebrated. If you don’t know what to say, just say that. Don’t stay silent or worse say something that could be deemed as insensitive. Tell your friends you will be there for them whenever they want to talk. Make them a dinner for coming home from the hospital or offer to help with housework. Let them know that they are the most important people in their babies lives.

I wouldn’t wish our NICU journey on our worst enemy. If someone you know is currently going through their own NICU journey have a thought about what I have written above.

Stay Cool.

Scottish Twin Mamma

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