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10 Comments I Did Not Want to Hear When My Baby Was in the NICU

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When my oldest daughter was born in our small rural hospital, she was immediately transferred to a large hospital an hour away due to complications. I had lost too much blood and was left behind until the following day when I checked myself out of the hospital so I could be by her side. The first time I saw my baby in the NICU in her isolette covered with wires and tubes, I cried. A nurse walked in and told me, “No crying people allowed in here.” I think she was being funny, but her comment was extremely inappropriate and hurtful.

While I do believe most people are trying to be supportive when they make unsolicited comments, it doesn’t mean those comments are not hurtful or make us feel worse inside.

We reached out to parents of NICU babies and asked, “What comments did people say to you that would make it in your list of ‘what not to say’ and why were these hurtful or offensive?”

We know many of these phrases were not said with malice, but we hope this post will help people understand how to best help a NICU family when they’re at their most vulnerable.

These were their responses:

1. “God only gives us what we can handle.”

If we are going to dish out “spiritual advice,” we should at least make sure it is accurate. Without getting into theology here, this is not true — the sentiment has been taken out of context from a verse in the Bible talking about temptation. As one mom shared, “Sometimes I feel like I just can’t handle it.” I’ve been there, too.

2. “It could be worse.”

Yes, it could, but that statement dismisses the current situation, and there is never a time when having a sick newborn baby in the hospital is not hard.

3. “How can you go home and sleep at night away from your baby?!”

Ideally, our babies would have come home with us with no complications. But for many parents, there are other children at home, and as difficult and stressful as life is, it goes on. This is a unique and difficult time when one of the few things we can actually do for our babies is be well rested. We sleep with the phone next to us, dreading a call from the hospital but ready to get in the car the moment it is necessary to be with our babies.

“Someone once asked me why I was not sleeping at the hospital every night and claimed that if it were her child, she wouldn’t just leave him there. They only had a chair for me to sleep in, which I did some nights, but most of the time my husband and the nurses would make me go home to sleep for a few hours and shower.” — Alexandra D.

4. “When are you bringing your baby home?”

We wish we knew. As Faith G. said, “It was the hardest question to answer, as we just didn’t know.”

5. “Once your baby is home, everything will be OK.”

Maybe. Maybe not. For some babies, the NICU is only part of the journey. One of my daughters was born at 27 weeks, she had a stroke and as a result, cerebral palsy. For other babies, there could be other complications or life-long issues.

“All of the stories about kids who went home and lived ‘normal’ lives. People were convinced my daughter would come home and be a totally average kid, no matter what I said. We were lucky enough to be able to bring my daughter home, but our journey is far from an average one. While she has a very full life with lots of joy, she will always struggle. Also, the reality is that the NICU was not the end of our relationship with the hospital. She’s had many more stays, and we could lose her at any time.” — Jaime G.

6. “You are doing it wrong.”

What is the “right” or “wrong” way of having a baby in the NICU? Every parent is doing the best they can — learning as fast as they can about the medical complexities their babies are fighting.

“I saw my daughter for the first time the day after having an emergency C-section, I was not allowed out of bed for 24 hours. As you can imagine how excited I was to finally see her. She was crying so I reached into the incubator and stroked her tiny cheek. She had stopped crying when I heard a voice saying, ‘You are doing it wrong.’ She then made me cup my daughters head which made her cry more. She ruined the first moment I was able to see my daughter. All the time she was in hospital I was scared that I’m doing it wrong and her voice has stuck with me since.” — Charlotte H.

7. “I could never do it.”

Do you love your children? Then yes, yes you could. It’s really that simple. You can acknowledge that this is really hard, and it is. What we need most is your support.

8. “But she was born full-term!”

Yes, but that does not mean a baby won’t be sick, be born with an unexpected medical condition or experience complications that warrant a stay in the NICU.

9. “Your experience reminds me how lucky I am.”

Good for you? Yes, I am so glad you did not have to go through this, I really am. But this is not about you, so instead, could you offer support and compassion?

10. “You should not ask questions. Whatever doctors tell you needs to be done.”

When it comes to medical complexities, doctors usually know best. After all, they are the ones with a medical degree. However, it should be OK for me to ask questions when doctors propose a course of treatment or intervention. Many of us have spent countless hours already reading about our child’s condition, and in just a few days, weeks or months, we do acquire knowledge. When we ask questions, we either want to understand or perhaps we wonder if there are less invasive procedures to help our babies. We want what is best for our child!

“My worst comment was from a resident when we disagreed with one of the specialists wanting an invasive procedure (we agreed with the neurosurgeon involved in her care, who said the procedure wasn’t necessary). The resident said, ‘We only want what’s best for your daughter.’ This implied that I didn’t and that I was a horrible parent. By the way, the neurosurgeon was right and my daughter didn’t need the procedure.” — Alison C.

If you’re “guilty” of saying one of these comments, think on how you can help spread some empathy by offering to listen to your loved ones instead. Most likely, all we need is someone to sit with us. Sometimes words are not necessary. Sometimes all we need is someone to ask, “How are you doing?” and listen to what we have to say. And sometimes, all we need is someone to send a text or a card that says, “thinking about you and your baby.”

Was your baby in the NICU? What comments were said to you that were hurtful? Let us know in the comments.

Getty image by Kwangmoozaa

Originally published: October 11, 2018
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