Birth Plan for (Babies Name)
(Our Child) was diagnosed with Limb Body Wall Complex at approximately (#) week’s gestation. Limb Body Wall Complex is generally believed to be a fatal diagnosis. However, this prognosis was decided many years ago, and medical science has advanced to the point where many previously “fatal” disorders are now survivable.
As far as can be seen via ultrasound and/or MRI, (our Child) has no confirmed individually lethal birth defects. All of our child’s defects are currently able to be surgically corrected, or pose no immediate threat to (our Child’s) life. The only immediate, apparent, life threatening defect our child has is (an abdominal wall defect), which is treatable.
We want (our Child) treated aggressively. Please do not treat our child as a child who is “just going to die anyways”.
1. We have chosen to name our child (Baby’s Full Name). Please refer to her/him as (Parent’s preference).
2. We would like to meet any hospital staff who will be caring for (our Child) if possible before the delivery. We would like them to read our birth plan and discuss any questions they may have about caring for (our Child.)
3. We request that (all specialists) who have been caring for (our Child) during our pregnancy be present at delivery as well as after (our Child’s) birth, so that they can monitor (our Child’s) care.
4. (Our Child) is to born via Cesarean section, in order to avoid rupturing the (abdominal wall defect). Cesarean section will be either scheduled or performed after the beginning of spontaneous labor. Under either circumstance, (Mom) is to be given steroid treatments to facilitate (our Child’s) lung development as soon as possible (before surgery), preferably within two hours before surgery commences. (Mom) is also to be given an epidural and pain relief. (Mom) would like to be awake and alert, with as little pain as possible during and after the birth of (our Child).
5. When (our Child) is born, we want him/her treated aggressively. He/she shall be provided any medical attention he/she needs. (Resuscitate, Intubate, Oxygen, etc.) He/she shall be treated as a child without a fatal condition, since no lethal defects have been found thus far. He/she shall be treated as a child whose sole life threatening issue is his/her (abdominal wall defect). You shall do everything necessary for his/her survival that you would do for any other baby who has (an abdominal wall defect).
6. We understand that (our Child), if he/she survives, will need to be transferred to the NICU for care. However, we request that he/she be aggressively treated in the delivery room and that (Mom and Dad) be able to see and if possible hold (our Child) for a second before taking him/her away.
7. Our Priest/Pastor shall be present to bless and/or baptize (our Child) once breathing and stabilization is established. (Our child) is not to be removed from any life support machines without being baptized and/or blessed.
8. If any personnel are available, we would appreciate their help in taking photos of (our Child). We will provide a camera.
9. We want (our Child) thoroughly checked and treated by the appropriate specialists to confirm that (our Child) does in fact have Limb Body Wall Complex and to clarify where each abnormality exists.
10. We realize that (our Child) may have special needs, and we know his/her chances of survival are in question. However, he/she shall not be denied any medical care just because he/she has been diagnosed with Limb Body Wall Complex. If (our Child) dies, it will not be due to denial of medical care because of a personal opinion about “quality of life” issues by any medical staff.
11. We would like to have a nurse or social worker present to periodically deliver news to any waiting family members.
12. We request that (Dad) accompany (our Child) from the delivery room to the NICU, and that he is present when they prepare (our Child) for any surgery immediately needed, in case (our Child) dies.
13. After (our Child) is removed from the delivery room, (Mom) would like to be moved to a private room away from other new moms, who may have their babies in their room.
14. If (our Child) dies in the delivery room, we request as much time as we need to be alone with (our Child).
15. If (our Child) dies in or on the way to the NICU or to surgery, we would like (Dad) to inform (Mom), and for (Dad) bring child back to (Mom) as soon as possible.
16. In the case of (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.
17. We would like the following items:
Leads and wires
Hand and Footprints
Locks of hair
18. At any time, we the parents, (Mom and Dad Jones) have the right to make or change any and all decisions for (our Child’s) care. Thank you for working with us in hopes for the survival of our son/daughter. This has been a difficult journey for us; we appreciate all that have decided to help us try to create a miracle, and who have decided to work towards giving (our Son/Daughter) a chance to live a long and wonderful life no matter how special he/she may be
This is a sample birth plan if you would like to seek aggressive medical intervention for your child. These are just guidelines to help you on your way to making your child's birth as easy as possible. You should alter them to suit your personal preferences.
Please note that stories of survival are anecdotal at this point, and babies with LBWC will most likely pass away shortly after birth, if not during the birthing process. The inclusion of this birth plan in no way indicates that there is a set protocol for ensuring the life of a baby with LBWC, and this option should be discussed with your healthcare provider and a neonatologist in order to mitigate any potential, unnecessary suffering on your baby's part.
With LBWC, it is advised that you have a birth plan ready by about 24 weeks, due to the fact that babies with LBWC are often born early.
Please understand that even in the best of circumstances, you may not be able to follow your birth plan to completion. There are many variables that can affect the birth of a "typical" baby, and LBWC babies are anything but typical.
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