What to Say (and Not to Say) to Parents of a Preemie

After having two premature babies, many of my friends now come to me as the “preemie mom expert” when they or someone they know has a preemie baby. They want to know what they can say or do, and how to avoid making insensitive or hurtful comments. Here are a few thoughts on what to do and say, and what not to do or say, to offer support to a family with a baby born prematurely.

Things NOT to Say or Do

• Don’t say, “I know a preemie baby and he is now 6 feet tall and is totally fine.”  That’s awesome — but that is that preemie, not all preemies. My baby is still fighting for his life, not to mention that I just saw a preemie die in the bed space beside me.
• Don’t say, “All he needs to do is grow, give him time. He will grow.” It is so much more than just gaining weight. They need to learn how to breathe and eat, fight off infection, brain bleeds, eye growth and disease, reflux, and more.
• Don’t say, “At least you didn’t gain weight/suffer through the third trimester.” Really? How would you feel if you spent that third trimester and sometimes beyond in the hospital?
• Don’t say, “He is so tiny.” I’m aware he is tiny. I don’t need a reminder. Instead, say, “I bet he has grown so much lately,” “He looks strong,” “He looks healthy,” or “He looks so cute.”
• Don’t tell me to “expose him to germs, it’s good for them.” For a full-term, healthy baby that may be true, but it is the complete opposite for preemie babies. A simple cold can be fatal. So I will make you sanitize or even wear a mask, and you cannot come over if you have a cough.
• When he is home, don’t think that the fight is over. It is not, it will not be for a very long time, if ever. The fight continues long after we are discharged.
• Don’t say, “Let me know what I can do to help.” I will not ever know what you can do. Just think of something helpful and do it.

 

Helpful Things to Say and Do

• Do say, “This sucks, I’m so sorry, you have lost so much.”
• Do say, “How is he/she doing?” — not “What is wrong with him/her?”
• Do congratulate the parents. When my son and daughter were born, I never got one “Congratulations,” not one “Yay, you’re a mom!” Try to remember that although the situation has its challenges, there is a sweet baby now, and they are now parents.
• Do tell the parents that they are doing a good job, that they are being strong and doing all they can do and that they are doing awesome at it.
• Do say, “What time in the day is best for a visit/ for me to drop off food/ for a quick hug?”
• Please come and visit the parents in the hospital — but don’t expect much. They may need you to just sit beside them, holding their hand, without saying a word, quietly reading or staring at their precious baby. It probably won’t be a social visit; in fact, don’t expect any form of communication. And please be OK with mom leaving every two to three hours to pump.
• Please bring them food, coffee, gift cards, home-cooked food, sweaters, books, journals, cute baby clothes, and a bag to hold it all. Preemie clothes can be hard to find, but the smaller the better.
• Do drag them away from the NICU every once in a while for a cup of coffee and to see the sunlight.
• Do help take care of any other babies that are at home.
• Do say, “I’m sorry for this difficult journey,” ”I’m sorry for your pain.”
• Do say, “I wish I knew what to say.”
• Do say, “I wish I knew how to make you feel better.”
• Do say, “I have no idea what you are going through, what you have lost, and what you must be feeling” — acknowledge that you have no clue what to do. We appreciate that more than you know.
• Do research the area and find some place new to eat — hospital food is only good for so long.
• Do help out the other family members — it is so much more than mom and dad grieving and struggling. The baby’s grandparents, aunts and uncles, siblings, etc. need support, too.
• Often the family is not prepared for the baby because they came months too soon.  So buy them some things, get the nursery ready, paint, do laundry, etc.

 

Thank you to the preemie mom friends I have met on social media who have helped with these lists. Please share this with others you know who have had a preemie or know someone who has had one.

Follow this journey on A Little of This and That Mama.

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