What to Expect: For Families of Babies with Premature Lungs

(La versión en español de esta página está disponible aquí)

You might be wondering what the future looks like for your baby’s breathing – in the next few weeks, months, and even after going home.

There are different scenarios that babies with premature lungs may encounter. This video explains several possible scenarios your baby might experience, to help you decide what to discuss with your family and your baby’s medical team.

NICU Parent Video: Babies with Premature Lungs

Questions That Families May Want to Ask (click here for printable pdf)

Here is a list of questions that parents in situations similar to yours may have wanted to ask their baby’s medical team.

PREMATURE LUNGS

  • I want to better understand premature lung disease. Will you explain it to me?
  • How severe is my baby’s lung disease?
  • Will my baby have lung disease for the rest of their life?
  • How are growth and lung disease connected?
  • When will we know if my baby needs medicines for their lungs?

PROLONGED HOSPITALIZATION

  • My baby still needs breathing support. What does this tell me about their lungs?
  • How will I know if there is stress on my baby’s heart from their lungs?
  • How will the medical team know that my baby does not need breathing support anymore?
  • When will my baby be able to eat by mouth?
  • Will my baby ever be able to breastfeed?
  • When will you know how long my baby will be in the NICU?
  • What is a rehabilitation hospital and will my baby need one?

HOME MEDICAL TECHNOLOGY

  • What type of medical technology could my baby need?
  • When will we know if my baby will need medical technology at home?

 DEVELOPMENT

  • The video talks about delays in development. What does this mean?
  • How will I know if my baby will have developmental delays?
  • How will I know if my baby needs therapy to help with their development?

 RECURRENT ILLNESSES

  • Do you think my baby will need to be in the hospital again after he goes home?
  • What can I do at home to keep my baby from getting sick?

ASTHMA

  • What is asthma?
  • Are there signs now that my baby will have asthma later?

PREMATURITY

  • How can I learn more about premature babies and lung disease?

Project Team

Cecilia Young Kwak, MD, MPH

Johns Hopkins Medicine, Division of Neonatology

Renee D. Boss, MD, MHS

Johns Hopkins School of Medicine, Johns Hopkins Berman Institute of Bioethics

Lemaat Michael, MD

Johns Hopkins Medicine, Division of Neonatology

About This Project

The purpose of this video is to help families understand the possible paths that their baby with premature lung disease may experience in the NICU or after going home.

The information in this video reflects a wide range of experiences that premature babies have in the first few months of life. It is based on what has been studied about premature babies and lung disease. This video was created with funding by the Johns Hopkins Innovations Fund. For more information, please contact Dr. Cecilia Kwak, MD, Johns Hopkins Medicine Division of Neonatology,  at [email protected] or Lemaat Michael, Neonatal-Perinatal Medicine fellow, Johns Hopkins, Division of Neonatology, at [email protected].