• Skip to primary navigation
  • Skip to main content

Premature Family Decisions

Stories about making a difficult choice

  • Home
  • Topics
    • A Difficult Decision
    • Time in the NICU
    • Life at home
    • Life changes
  • Characters
  • Glossary
  • Español
You are here: Home / Topics / A Difficult Decision / A decision to make

A decision to make

A decision to make

Parents may see the options about what to do for their baby at birth differently. You may hear the term “resuscitation” to describe putting in a breathing tube or doing CPR.

You can listen to two different family experiences below.
Elijah

When the doctors came in to talk to us, it was information overload…

Read Transcript

Elijah:

When the doctors came in to talk to us, it was information overload. They shared so many possible scary outcomes. It felt like no one had any good news to give us.

We tried going to Google, but that made things worse, so I wouldn’t recommend that. They told us we had a choice, but we couldn’t bring ourselves to talk about it.

We were still grieving the loss of a normal pregnancy, and now we had this huge decision in front of us. Of course, we wanted to do what was best for our Amani, but it wasn’t that simple.

We were both sad, angry, scared, and overwhelmed all at the same time. I remember thinking, was she ever going to be able to live independently, go to school, play sports, go to college, get married?

Her mom was more focused on getting to meet her daughter. Like some families, we wanted the doctors to at least try to help her breathe, so we could see what she could do.

Jane

I felt guilty I couldn’t carry Grace to term, but they told me it wasn’t my fault…

Read Transcript

Jane:

I felt guilty I couldn’t carry Grace to term, but they told me it wasn’t my fault. The doctors told me every family has their own situation. Every family makes a decision that’s right for them and there is no right or wrong choice.

I knew I didn’t want her to suffer just because I wanted her, especially since there was a chance that, even if I put her through pain, the outcome could still be the same. And if she did survive, could I give her a good life?

Even though I felt guilty, I asked the doctors what happens if all the medical things are too much. They said that’s a really important thing to talk about, and they walked me through what that looks like. They also explained ways we could make our short time together meaningful and make memories.

Her grandparents and I weren’t on the page but in the end, but it was my decision. I had to do what I thought was right for Grace, not for me, or my parents.

Go to next topic

Website Text and Audio Scripts
© 2023 Johns Hopkins University

Illustrations and Audio Recordings
© 2023 Booster Shot Media, Inc.

Privacy Policy