Becoming an informed parent
The more you know about your baby's medical condition and care, the more you can look out for his best interests and be his advocate. And the more you know, the more you can take care of him and collaborate with his medical team.
It's normal to have many questions about your baby's medical condition and what the future may hold. You may want a lot of information right away, or you may need more time before you can hear the answers. You may have to ask some questions several times because the answers can be too much to take in all at once. Sometimes there are no definite answers to your questions, but learning what is known can help relieve some of the uncertainty.
To get information at a comfortable pace, let your questions be your guide. Write down your questions as you think of them so that you can seek the answers when you're ready. Ask your baby's doctors for written information. Take notes so you can review and remember their answers. You can also invite a trusted family member or friend to join you if you want another pair of ears to hear important information.
- How is my baby doing today?
- Has anything changed?
- What caused this condition?
- How will this equipment or medication help my baby?
- What types of tests are being given to my baby and what information will they provide?
- Who is in charge of my baby's medical care?
- Who should I call if I have questions about my baby's condition?
- How will I be informed of any major change in my baby's condition?
- Can I hold my baby?
- What can I do to take care of my baby?
From the start, make it your goal to form a good working relationship with the neonatal intensive care unit (NICU) staff. As you get to know your baby's doctors and nurses, you will feel more comfortable approaching them and asking questions or making suggestions. Ask them to keep you informed about your baby's medical condition. When there are choices about your baby's care, you should be included in making those important decisions. After all, you and your baby's medical caregivers are a team. You all share the same goal: the best care for your baby.
Sometimes you may feel anxious about what you learn. But it can be even more frightening when you don't know what's going on or what to expect. Uncertainty is a common part of the NICU experience. But as you learn more about your baby's condition and treatments, you'll feel more in control of the situation. The more you know, the more involved you can be and the more you can advocate for your baby.
See also: Share your story
Excerpted from the March of Dimes booklet, "Parent: You & Your Baby in the NICU", written in collaboration with Deborah L. Davis, Ph.D., and Mara Tesler Stein, Psy.D., authors of "Parenting Your Premature Baby and Child: The Emotional Journey".
Frequently Asked Questions
Is it OK to hold my baby in the NICU?
It depends on your baby's health overall. Some newborn intensive care units (NICUs) will encourage you to hold your baby from birth onward. Other NICUs will want you to wait until your baby's health is stable. Ask your NICU staff about its policy on kangaroo care (holding your baby on your bare chest). Kangaroo care has benefits for both you and your baby. The skin-to-skin contact is a precious way to be close to your baby. You may be afraid you'll hurt him by holding him. But you won't. Your baby knows your scent, touch and the rhythms of your speech and breathing, and he’ll enjoy feeling that closeness with you.
My baby was born full term. Why is she in the NICU?
Not all newborn intensive care unit (NICU) babies are born premature. Some babies, even those born full term, may need special care. Your baby may need to spend some time in the NICU if she had a difficult delivery, has breathing problems, has infections or has birth defects.
Most babies leave the NICU just fine. Others may need more special care once they're home.