Mother of a Baby Who Was Expected to Die During or Shortly after Birth Survey

Question Title

1. Was it expected that your baby would die shortly after birth?

Yes

Comment

Question Title

2. What gestational age was your baby when you found out he/she had a fatal diagnosis? (if you are not sure, type "Unknown")

Question Title

3. Please check any of these delivery situations you experienced. (Please check any that apply)

This was expected to be a normal delivery.

I knew this delivery was high risk.

I had to deliver early because my baby needed treatment outside of the womb.

I had to deliver early because my baby was in distress.

I carried my baby to term

I carried our baby 40+ weeks.

I carried our baby 38+ to 40 weeks

I carried our baby 36+ to 38 weeks

I carried our baby 34+ to 36 weeks

I carried our baby 30+ to 34 weeks

I carried our baby 26+ to 30 weeks

I carried our baby 22+ to 26 weeks

I carried our baby less than 22 weeks

I was able to hold my baby within 20 minutes after their birth.

I chose not to hold my baby after he/she was born.

Our baby needed immediate medical attention which prevented me from holding him/her within 20 minutes of birth.

I chose to deliver my baby early and let him/her die due to his/her medical problems.

I chose to carry my baby. with serious medical issues. to full term.

I was able to prepare with a perinatal hospice, loss doula,or loss professional.

Other

Comment

Question Title

4. Did you have a perinatal or pediatric hospice involved?

Yes

Comment

Question Title

5. Did you make plans for your baby’s birth and care after birth, prior to delivery at the hospital?

Yes

Comment

Question Title

6. What plans did you make prior to admission for delivery? (Please check any that apply)

I explored medical decisions for the baby and made plans.

I explored medical decisions on comfort measures for the baby and made plans.

I made plans to hold my baby.

I made plans not to hold my baby.

I made plans to dress my baby.

I made plans to bathe my baby.

I made plans for pictures of my baby.

I did not plan any activity with my baby.

I made plans for religious rituals. (examples: christening or baptism)

I chose which family members to be present during or shortly after birth.

I made plans for footprints and/or handprints.

I made plans to keep a lock of my baby's hair.

I made plans for other mementos.

I did not make plans for mementos

I don’t remember

Other

Comment

Question Title

7. Are there any decisions and plans you regret not making? (Please check any that apply)

I regret not exploring medical decisions for the baby and making plans.

I regret not exploring medical decisions on comfort measures for the baby and making plans.

I regret not making plans to hold my baby.

I regret not making plans to bathe my baby.

I regret not making plans to dress my baby.

I regret not making plans to have pictures of my baby taken.

I regret not making plans for religious rituals (examples: christening or baptism)

I regret not making plans as to which family members to be present during or shortly after birth

I regret not making plans to keep a lock of my baby's hair.

I regret not making plans for footprints and/or handprints

I regret not making plans for other mementos

Other

Comment

Question Title

8. Please check any experiences that apply to you finding out, from your doctor, that your baby had a fatal diagnosis. (Please check any that apply)

The doctor looked concerned

The doctor was cold

The doctor was kind and empathetic

My doctor gave me many options including carrying my baby to term and termination.

My doctor did not give me any options.

My doctor assumed I would carry to term.

My doctor pushed for termination of my pregnancy

My doctor was very supportive of my carrying my baby to term.

My doctor appeared frustrated that I wanted to carry my baby to term

My doctor told me it would be unfair to my baby to carry him/her to term

My doctor said it would be better for the baby if we terminated the pregnancy

The doctor said it would be better for me if I would terminate the pregnancy.

My doctor was very supportive of me.

I changed doctors because of how I was treated

I was happy with how my doctor handled the situation

None of these apply to my experience

Other

Comment

Question Title

9. What type of information did your doctor share with you? (Please check any that apply)

I was informed about delivery benefits and dangers (pros and cons) and allowed to make choices.

I was told I needed a C-section.

I was told my breast milk may come in after birth and how it could be handled.

I wish I had been given more information.

I wish I had been given less information.

I don’t remember.

Other

Comment

Question Title

* 1. Was it expected that your baby would die shortly after birth?

Question Title

* 2. What gestational age was your baby when you found out he/she had a fatal diagnosis? (if you are not sure, type "Unknown")

Question Title

* 3. Please check any of these delivery situations you experienced. (Please check any that apply)

Question Title

* 4. Did you have a perinatal or pediatric hospice involved?

Question Title

* 5. Did you make plans for your baby’s birth and care after birth, prior to delivery at the hospital?

Question Title

* 6. What plans did you make prior to admission for delivery? (Please check any that apply)

Question Title

* 7. Are there any decisions and plans you regret not making? (Please check any that apply)

Question Title

* 8. Please check any experiences that apply to you finding out, from your doctor, that your baby had a fatal diagnosis. (Please check any that apply)

Question Title

* 9. What type of information did your doctor share with you? (Please check any that apply)

1. Was it expected that your baby would die shortly after birth?

2. What gestational age was your baby when you found out he/she had a fatal diagnosis? (if you are not sure, type "Unknown")

3. Please check any of these delivery situations you experienced. (Please check any that apply)

4. Did you have a perinatal or pediatric hospice involved?

5. Did you make plans for your baby’s birth and care after birth, prior to delivery at the hospital?

6. What plans did you make prior to admission for delivery? (Please check any that apply)

7. Are there any decisions and plans you regret not making? (Please check any that apply)

8. Please check any experiences that apply to you finding out, from your doctor, that your baby had a fatal diagnosis. (Please check any that apply)

9. What type of information did your doctor share with you? (Please check any that apply)