Do’s and Don’ts When Your Friend Has a Premature Baby

Sometimes forgotten in all of the stories through the years is the fact that Sarah Kate was a premature baby. I started this blog shortly after Nathan was born, when she was seven. Although I’ve sprinkled in a few stories from her early years, most of the Sarah Kate content here dates from 2010 forward. As a result of a couple of conversations I’ve had recently with NICU veterans (and I don’t mean the babies), I realized that one of the most significant chapters of her life – and mine – was missing: the NICU.

You can read her birth story, including an overview of our NICU experience, in these posts, but one thing I haven’t written much about is how the experience affected us…particularly how friends and family both helped and hindered us along the way. I’ve learned since those early days that our experience was not uncommon, and some people have a much harder time of it from an interpersonal standpoint than we did. Knowing that, there are some hard truths that I believe loved ones of NICU families need to hear.

On Seeing a Premature Baby

A premature baby may not look the way you expect. Prepare yourself before going in, because depending on the situation, a premature baby may have wires attached to her skull, be frighteningly thin, have translucent skin, or have a variety of other non-typical newborn things going on. If you don’t think you can be encouraging, simply don’t go in. Offer to wait because you “don’t want to disturb family time” or selflessly volunteer to let others go in first if you want, but for the love of Pete, absolutely do not react negatively to what you see with your words, expressions, or body language. The parents see a beautiful baby, and that’s what you must see, too.

The parents want you to see their baby, and they’re happy that you care. They’ll accommodate you as best they can, but “as best they can” may mean you not spending much time around the baby. I know you really, really want to see the baby, but you need to get over yourself. Let them take you in when it’s a good time for them. Also, don’t try to talk your way into the NICU without the parents. It almost certainly won’t work, but if it does, you will have violated not only their privacy, but their trust.

The parents have not been alone with their baby for even one moment since she was born, which may be weeks or even months. They may not be able to hold their premature baby. If they are fortunate enough to be able to hold her, they may be restricted to as little as a half hour per day for both parents combined. I know you want to see the baby out of the incubator, but is it really fair to the parents to hang around like a bad smell during that small window of semi-private physical contact time they will have with their baby? (HINT: no, it’s not.)

No, you can’t hold a premature baby, even if you’re a relative, so don’t ask. Be happy you got to come in at all, and don’t overstay your welcome. The time for you to see and hold the baby will come later, so be patient. In the event that the unthinkable happens and that day never comes, be glad that you didn’t take away a single precious moment of the baby’s life from her parents who must go on without her.

On Helping

One my co-workers knew and attended church with a good friend of mine and her husband. After Sarah Kate was born, my co-worker’s wife recruited my friend and they rallied scores of people to both cook for us and pray for us, and it was The Best. I could physically feel those prayers, as odd as that sounds. Not one of those people came to the hospital to see us or the baby – most of them I never met. They simply did useful things we needed, and expected nothing in return. It was true help that meant the world to me.

Don’t ask what you can do – come up with some practical ideas of your own and offer them. Food is always needed, of course, but dig a little deeper. Did they have a chance to finish the nursery before the baby came? You can paint or assemble furniture! They probably aren’t home much other than to sleep and shower – how about washing and folding their laundry? Are they housed away from home while the baby is in the NICU? Visa gift cards to pay for gas and food are easy and incredibly useful.

On Offering Encouragement and Advice

You may know fifty sets of mothers and babies who are NICU veterans – you may even be one yourself – but I promise, you don’t know anything. There are some pretty solid guidelines regarding preemies (the size at which most can maintain their body temperature is one), but repeating those to the parents is a waste of time, because they already know. Everything else is baby-specific, and they know more than you do, because they are the ones talking to the doctors and nurses every day. Ask for updates, but not specifics, from the parents, because they are tired and they don’t want to tell the same story a million times. And don’t ask the doctors and nurses questions – it’s not your baby.

Whatever your thoughts are on breastfeeding, keep them to yourself. In the beginning, I could do absolutely nothing for my daughter but pump milk and freeze it for later. Telling me to relax and not worry about it would have caused me to claw your eyes out. Later, when Sarah Kate was home and taking a bottle, the same thing would have happened if someone had told me I should throw out the high-calorie prescription formula they sent home with us. Breast milk is good, but survival is better.

Don’t talk about other NICU success stories. Yes, some preemies bust out of the NICU and never look back, and that’s amazing. But some preemies have long-term issues, and others never leave the NICU at all. They don’t want to hear about Jane Doe’s son Timmy who was a 28-weeker and was on track to be MLB Rookie of the Year before giving up baseball to pursue a cure for cancer, because their premature baby is not Timmy. Also, the future – even the near future – is a long way off when you have to take things one day at a time. Having someone tell you that someone else’s kid thrived five or ten or fifteen years after leaving the NICU is unhelpful when all you want today is for your kid to maintain her body temperature.

On Emotions

I’m sure it’s brutal to have a grandchild, niece, nephew, or other child of a loved one in the NICU. It’s an emotional time for everyone, and sometimes a family crisis prompts stuff to float to the surface that has lain dormant for a long time. Don’t choose this traumatic time to dredge up old wounds, even if you want to “make things right” with the best of intentions. The parents are doing all they can to stay afloat; don’t be an anchor on their emotions. Just love them right now. The rest can wait.

Final Thoughts

The NICU can be a joyful place, like when babies – especially the smallest and sickest – get to go home after an extended stay. It can also be a place of sorrow and despair, because some babies die. If your child is in the NICU long enough, you witness both. Thirteen years after I left the NICU for the last time, I still think about a little boy named David who lived his whole life in a plastic box a few feet away from my daughter, and about his sweet parents who were forced to grieve a second son lost.

The NICU is a tightly controlled environment for children in which parents have no control. It is a place where life both begins and ends, where the most vulnerable among us press forward in a fight for their lives, before their lives have gotten started. Some will lose the battle, but others will live to fight another day.

For the premature baby who wins that first battle, the NICU is a launching pad into an unknown future.

On Wednesday afternoon as I was finishing this post, I received word that a family member’s baby had died in utero at 33 weeks. I don’t want to share any more information, out of respect for their privacy, but I would appreciate your prayers for them now and in the coming days.