Sharing the news
You get to choose what information to share about your baby. Sharing the news may allow you to get helpful support from family and friends.
If people are unsure how to help, you could suggest:
- Bringing a meal
- Helping with your other children
- Helping with house or yard work
- Being a spokesperson to others on your behalf
As you get closer to your due date, strangers may ask, “When are you due?” or “Are you having a girl or a boy?” It may be hard to know how to answer questions such as these. It is your choice how much information, if any, you give.
Getting ready for birth
There may be many unknowns about your baby’s future. Your doctor may not be able to give you detailed information about your baby’s condition.
Here are a few ways you can get ready for your baby’s birth:
- Make each day count.
- Talk to your baby.
- Read to your baby.
- Enjoy your baby’s kicks.
- Call your baby by name.
- Play music.
- Keep a list of questions to ask your OB doctor.
- Keep a journal of your pregnancy.
- Talk about delivery planning with your OB doctor and health care team.
- Make a memory box of your pregnancy with:
- Ultrasound pictures
- A recording of your baby’s heartbeat
- Cards you get from friends
- Think about who you would like to have with you during your labor and delivery.
- Ask family or a friend to take pictures of your baby’s birth, if you would find that meaningful.
As you learn more, it might become clear your unborn baby’s life may be very brief. In some cases, families make a choice of comfort care only for their baby after birth.
This is a decision made based on your values, your goals for your baby’s life, and your desire to be with your baby throughout their lifetime. We will talk about this with you in detail if you would like to learn more.
Support after delivery
After your baby is born, you may feel many emotions. You may feel sad and disappointed that your baby’s medical condition has been confirmed. You may be anxious about the future. You may feel cheated out of the “normal” pregnancy and family you had hoped for. You may feel the same sense of shock you experienced when you first learned about your baby’s medical condition.
These are some things that may help as you adjust to life with your baby:
If you are planning to breast feed or pump breast milk, lactation consultants can give you information and support while you are in the hospital. The hospital has breast pumps, tubing, and storage containers so you will not need to bring items from home for pumping.
You may have learned about lodging, parking, and meals, among other things, from a social worker. You can talk with them again about this information after your delivery, if needed.
A family-centered service at University of Iowa Stead Family Children’s Hospital that offers care coordination for children with ongoing health care needs. COC can help with follow-up care your baby may need.
A service that offers ongoing palliative support for children with a serious medical condition and their families. This is an extension of perinatal palliative support you may have during your pregnancy.
Your baby may be able to get support at home through Early Access.
This is a program offered through your Area Education Association.