Palliative Care

This is a sample birth plan for a case of LBWC where survival is not expected, due to the severity of your child's defects. Please understand that this can be changed if upon your child's birth, it is found that the defects are less than expected. Also keep in mind that in some cases, where there is no hope for intervention, having a plan in place will assure that you are concentrated solely on your child's comfort. Choosing Palliative Care does not mean that you are "giving up" on your baby.

(Our Child) was diagnosed with Limb Body Wall Complex at (#) weeks GA. Limb Body Wall Complex is generally a fatal disorder. (Our Child) has numerous, serious birth defects that make his/her condition incompatible with life. We have known for months that our unborn baby is very ill and not expected to live very long. We have made an informed decision to carry this baby to term and keep our baby as long as possible. It is our priority to have our baby born alive. Please honor our request to preserve the dignity of our baby's special life.

1.       We would like each member of the hospital staff to be made aware of the situation. If possible, we would like to meet with them before (our Child’s) birth in order to answer any question.  

2.      (Our Child) is to be delivered via (C-section/vaginal delivery). (Mom) would like to be given an epidural and pain relief. (Mom) would like to remain alert during delivery.  

3.      We would like our child to be referred to by his/her name, (Name).
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4.      If necessary, we would like the doctor to cut the cord- this may be difficult for us to do as this is our baby’s lifeline
                                     OR

5.      We would like (Dad) to cut (our Child’s) cord.  

6.      We would like our baby to be cleaned and immediately handed to (Mom or Dad).  

7.       If possible, please have a nurse or other medical personnel available to take photographs. We will provide the camera.  

8.      We would like a social worker to keep any waiting family periodically updated as to (Mom’s) and (our Child’s) condition. When the baby is born, we ask that the picture of the baby be shown to waiting family members.    

9.      We would like (our Child) to be baptized/dedicated as soon as possible, after the cord is cut. If delivery is scheduled, we will have clergy present for this, if not, (Dad) will baptize/dedicate (our Child).  

10.   Because we do not know how long (our Child) will live, we would like to spend as much time as possible with the baby. Please delay any procedures that can be put off until later.

11.    If born living, (our Child) should be given “comfort care”. Feeding, Bathing, and Dressing should be done by parents.  

12.   We would like to be moved to a private room, away from other families with children. We would like all family members to be allowed in at our request.

13. Whether baby survives for any length of time, or not, we would like to "room in" with (our Child). If there are any procedures that need to be done to the baby outside the room, (Dad) will go with the baby. (Dad) will have the option of spending the night with (Mom) in her room.


​ 14. The baby will be breastfed, if he/she can. If he/she cannot, we wish to feed the baby with an eye dropper of extracted milk or formula before doing an IV.

15.   We wish to be with our baby and hold our baby at the time of death.


16.   If (our Child) dies in the delivery room, we request as much time as we need to be alone with (our Child).  

17.     After (our Child’s) death:

Please give us privacy without abandoning us.

Please allow any waiting family or friends to enter the room, regardless of age, at our request.

Please help us to bathe and dress (our child), and perform any post-mortem care if we request your assistance.

Please help us to take photographs.

Please call Now I Lay Me Down To Sleep @ (local photographer‘s #)

We would like to have as much time with (our baby) as possible. When we have decided that we are ready to say goodbye, we will call our funeral home to come and retrieve his/her body.

We do/do not want an autopsy

We would like the forms for a birth certificate, social security number and death certificate. (Mom and Dad) will fill out these forms.
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18.   We would like the following items:

Bassinet Card

Hats

Baby Blankets

Leads and wires

Hand and Footprints

Locks of hair

Hospital Bracelets



19.   At any time, we the parents, (Mom and Dad Jones) retain the right to make or change any and all decisions for (our Child’s) care.  

​We would like to thank everyone who has supported and respected us on this journey. While this has been a difficult situation, our conviction has only grown stronger that we have made the right choice and are grateful for the many people who are helping us to meet our son/daughter on our own terms.