Rachel Alice’s Birth Plan
October 13, 2010
Rachel Alice is due to enter the world on December 25th, 2010. She has been diagnosed with anencephaly. Knowing that our time with her will be short, it is important to us that as many of our needs be met as possible. My husband, Matthew, is to remain with me at all times.
As Rachel’s parents, it is our greatest wish to be able to cherish every moment we have with our baby, in a loving and caring environment. Please do not hesitate to ask us for clarification if it is needed. Our wishes all revolve around our need to spend as much precious time with Rachel as possible and to prevent her from suffering during that time, as well as to make this very difficult situation as easy on our hearts as possible.
We have chosen to have a c-section in hopes of improving the chances of a live birth and to ensure that Rachel is under the least amount of stress possible. I would like the least amount of medications as possible. I do not wish to have any narcotics or sedatives prior to birth. I absolutely do not want to be given Versed at any time. I do not anticipate having anything in surgery, other than an epidural, but if nausea becomes a problem, I would like Zofran given if necessary. Unless a life-threatening situation arises, I do not wish to be knocked out during the c-section. When it is time for the Doctor to take Rachel out, I would like the screen to be lowered so that I can see her. Matt will cut the umbilical cord. We would like my sister, Meagan to be in the O.R. with us to take pictures and my mom, Rachel, to be allowed in as soon as possible after birth by a staff member.
We do want the usual suctioning, drying off, etc. done, but would like it to be done on my chest or within my reach. Please include Matthew as much as possible. We want to be told right away if she is breathing or has a pulse. If she is not breathing, we would like efforts to initiate her breathing only. We would also like her given supplemental oxygen if needed. We anticipate that Rachel will be born with a large opening to her occipital area and neural tissue will be exposed. We would like a Saline or Vaseline dressing to be placed on any open area immediately after birth, and then an outer layer of gauze, whatever works best. We do not want eye drops placed in her eyes. We would like the staff to keep our family updated during this time so they will know if Rachel is alive or not. We do want Rachel weighed and measured when we request it. If we forget to request it, please do so before we leave the hospital.
We are enrolled to participate in a study through Duke University on neural tube defects. We will bring the CORD BLOOD COLLECTION KIT we have been provided with, as well as instructions for it. If possible, while drawing my blood pre-operatively, I also need blood drawn for this kit. Also please remember that Rachel is an ORGAN DONOR and we are hoping to donate her heart valves. If she is to pass while still at the hospital, please be sure to contact Pam Albert at the New England Organ Bank 617-558-6657. The recovery team will pick her up from us in our room, do the recovery, and bring her back to us. Rachel is NOT to go to the morgue at any time. We will decide when we are ready to have the funeral home pick her up directly from us.
It is very important to us that Rachel be with us at all times, preferably held by us. While I am being moved out of the recovery room, I would like to carry Rachel with me on the stretcher back to my room. Matthew & I will probably want some time alone with her, along with our other children. (Desirae, Isaiah & Samuel) We will have a person designated to bring them to us. We will also have someone designated to periodically give updates to family and to escort visitors to our room, at our request only, and to help with phone calls. We would like all visitors to wash their hands before coming in and would like gowns provided for them. Please do not allow anyone in the room without talking to us first, including housekeeping and dietary staff.
We have contacted Now I Lay Me Down to Sleep, a bereavement organization, and arranged for a photographer to come to the hospital and take professional photos. We ask that you accommodate them in any way that is helpful. Kelly Roy is our photographer and can be reached at 207-229-3882. She does not need permission to enter our room, we would like her with us as soon as possible.
If our time with her allows, I would like to breast feed Rachel. If she lives long enough to require nutrition, and is unable to take my breast, we would like to feed her with an eye dropper of extracted breast milk or formula. If that fails, we would like a feeding tube inserted.
Matt will give Rachel her first bath and Stacy will dress her in clothes we will bring. We realize that she will look different physically and will have anomalies. We hope that everyone can see her for what she is, our precious gift from God and our beautiful baby girl. If any of the staff on our team is uncomfortable with any of this, please excuse yourself from our care if possible.
If Rachel is born still or dies while still in the delivery room, I would like to be put in a room away from other mothers and newborns if possible. I would also like the door marked so others will know of our loss/impending loss without surprise. Please feel free to laugh and cry with us. We welcome the open expression of emotions from staff and family. As we have been grieving for several months for our daughter, please do not place expectations on how we should handle this birth. Advice is welcomed and our answers taken as our final word. We thank you for sharing in this experience with us, supporting us and helping us to make as many memories as possible while in your care. We pray that Rachel’s life will impact your hearts the way it has ours. She will be greatly missed and never forgotten.
With Hope,
Matthew & Stacy Aube
