Brianna has been diagnosed with bilateral renal agenesis, and is not expected to live very long beyond birth. We may have only seconds or minutes with her alive, but we may also be blessed with hours. Whatever we are given, we mean to make the most of it, and we ask for your help and support in accomplishing that.
Some of the things that we think will help us through this difficult time are listed below. We know that circumstances beyond everyone’s control may prevent or change some of these things, but we thought it would help all of us to have this down on paper, to refer to, in time of indecision or great stress.
This is our wish list:
1. We hope to have a vaginal birth, aided by pain relief. Carol needs to be alert during and after delivery, to the extent medically possible. Carol would very much like an epidural when the time is right.
2. We would like for Brianna to be monitored throughout the labor and delivery and to be immediately informed if Brianna is experiencing distress. If there becomes a point in time where it appears that Brianna could possibly die during labor, due to her breech presentation or other complication, we want to have a c-section to get her out and prevent that from happening. We would want to take the time to properly medicate Carol so she does not have any pain during the procedure, but at the same time, we want to ensure that Carol is alert throughout it and that her husband is by her side. We want Carol to have as best a physical outcome as possible, but our primary goal is to ensure that Brianna has every chance to meet us and that she is protected from unnecessary pain and suffering. We have come so far in our journey to meet her and then let her go, that we will want to do whatever we can to prevent missing out on that chance.
3. If Brianna is born alive and conscious, and is interested, Carol would like to breastfeed her.
4. Since Brianna is expected to be with us for such a short time, we want every second possible with her in our arms, beginning from the moment of her birth. Please help us in this by delaying (or even preventing, if applicable and possible) any procedures that can be put off until later. (PKU, ointment on her eyes, Vitamin K shot, etc.) If any procedures must be done, we would ask that they be done while Brianna is in our arms.
5. We would like for mechanical assistance to be used only temporarily to initiate Brianna’s breathing, if necessary, immediately after birth. We do not want any extraordinary measures taken to maintain breathing or to initiate a heartbeat. We are prepared to let Brianna go when her time comes, even if it is at the moment of her birth.
6. We wish for Brianna's father to be able to baptize Brianna as soon as possible, during birth, whether she is alive or not. If possible, we would like this to occur prior to or as the cord is being cut, since Brianna may die almost immediately. We plan to have holy water with us for this purpose (we are Catholic), but any water may be used. If it is not possible for Brianna's father to baptize Brianna, then we ask that any one of our attendants do so, making the sign of the cross on whatever body part is visible, saying, “I baptize you in the name of the Father, the Son and the Holy Spirit, Amen.” This baptism is very, very important to us.
7. Since we have been diagnosed with a genetic disorder, it is important that cord blood be drawn to be sent out for genetic testing. We will provide the information needed for sending out the cord blood. Dr. Rosengren at CT Children’s Medical Center is our genetics doctor.
8. We have brought clothing for Brianna that we would like to dress her in, when the time is right. We have a pink nightgown, caps, booties, a sweater and even a couple of bibs.
9. To help us celebrate and remember this special time with our daughter, we have thought about mementos and other things that we would like to do. Here is a list of those things; if there are others that you think we might want, we would be grateful for those suggestions.
a. Bassinet Card
c. Baby Blanket
d. Photographs (please help us to take pictures)
e. Video (after the birth)
f. Hand and foot prints
g. Hand and foot molds (we have kits with us)
h. Lock of hair
i. Hospital bracelets
j. We want to bathe and dress Brianna at an appropriate time
10. Once Brianna has passed on, we will want to keep her with us for a period of time. We would like space to grieve, but at the same time, may need your help with notifying relatives and the funeral home, and in making decisions about next steps. At this time, we do not plan to have an autopsy performed on Brianna’s body. We do expect that geneticists will examine Brianna, and if there is a recommendation that there is a specific need for an autopsy, we will consider it at that time.
11. We wish to keep Brianna with us until the funeral home comes to get her, if possible. We realize that this is dependent upon time of day and other circumstances, so we will be open and flexible as to what is appropriate.
12. We wish for Brianna's father to remain with Carol, overnight and as needed throughout this time. If a c-section becomes necessary, as listed earlier, we very much need to be together to the extent possible during that time as well. We expect that he will stay overnight with Carol possibly throughout her hospital stay.
13. We do not know at this time at which
point we will want to call family members and have them come to be with
us. If Brianna lives for some period of time, we want to be able to call
our immediate family and have then join us, regardless of time of day.
We have a 20-month-old daughter, whom we may want to have come immediately,
with her grandparents. Please help us with phone calls and getting
visitors in at any time, as time will be of the essence for us, and we
do not want to have any avoidable regrets or missed opportunities.
This is a very difficult time for all of us – including you, as you work to support us and care for us throughout this part of our journey. We truly appreciate your help and support, and ask that you understand if we seem indecisive or even angry at times. We also appreciate and find great comfort in your expressions of grief, be it through tears or even through humor, so please do not hesitate to cry or be sad in front of us, if that is how you feel.
We have tried our best to prepare for this
short time with our beloved Brianna, and we want to be able to spend as
much time with her as possible. Thank you so much for helping us
and supporting us through this celebration of our daughter’s short but
precious and meaningful life.
This website was created by
(In Memory of her daughter Gabriela Lael)
Potter's Syndrome Forum