Illustration by Donna Green from The Velveteen Rabbit.
“Real isn’t how you are made.
It’s a thing that happens to you.
When (someone) loves you for a long, long time,
not just to play with,
but REALLY loves you, then you become Real.”
We will soon go through labor and delivery of our child who has been
diagnosed with Renal Agenesis, also called Potter’s Syndrome. Riley’s
kidneys failed to grow past week five of their development. His condition
is incompatible with life. After birth, he may or may not live for a short
On average, baby’s without kidneys live for a half an hour. We hope and
pray that we might see him alive if only for a little while.
Understandably, we want that time spent with him to be precious. Please
read our plan, which will help anyone involved with his birth to assist us
in creating a loving and caring environment for our family.
Each of you can assist us during this difficult time by understanding and
respecting the wishes we have outlined below:
1. We hope to have a vaginal birth, aided by pain relief. Laura wants to be alert during and after delivery, to the extent medically possible. Laura would very much like an epidural when the time is right. If a C-section becomes necessary, please use a local anesthesia if possible to keep Laura awake for Riley’s arrival.
2. Fetal monitoring of Riley’s heartbeat is something we prefer not done. It will not affect his outcome and would be very difficult for us to know if he died during our labor.
3. We have a CD player with some comforting music to play during the labor and birth.
4. We would like for the doctor to clear Riley’s airways to initiate his breathing, if necessary, immediately after birth. We do not want any extraordinary measures taken to prolong his life other than any routine care that would be given to any normal newborn (i.e. suctioning for respiration). After determining whether or not there is a heartbeat or breathing, we request that the doctors use phrases such as “I’m sorry Riley didn’t make it,” or if he is alive, “We have a heartbeat,” or “He is breathing” rather than something cold and technical.
5. In the surprising event, that the baby is a girl we will name her “Annabelle J. Charles.” Her middle name will be simply “J.” Although, we have been told he is very likely a boy from the results of an MRI.
6. We ask that Riley be placed in Laura’s arms immediately after birth, as we want to spend as much time with him as possible. Please put off any unnecessary procedures until later. Kevin may want to cut the umbilical cord if he is up to it.
7. After he is in our arms, we want to have him baptized by Chaplain Mary xxxxx
(123) 123-1234. Please be sure the nurses call her when we come in and when the birth is pending, so she can be prepared. In the event that Riley passes away before she arrives or before he is born, we still want him to be baptized. A family member can do this by simply saying “I baptize you, in the name of the Father, Son, and the Holy Spirit. Amen.” We will have holy water with us for this purpose.
8. Because Riley has Potter’s Syndrome, we have requested that he be tested for any genetic connection. Please notify Dr. Debra xxxxx from xxxxx Health Partners pediatrics (123) 123-1234 when we come in and when the birth is pending. Dr xxxxx has assured us that he or the doctor who is with us will take a piece of the baby’s placenta for genetic testing. We also want an autopsy to be done after we have taken the time we need to be with him.
9. When we are ready, we want to bath and dress Riley. We have two outfits, one for a boy and one for a girl just in case.
10. Please give us some privacy without abandoning us. Encourage us to do whatever feels right. Let us keep Riley with us for as long as we would like. Allow our family and close friends to visit with Riley and us after we have dressed him.
11. After Riley is dressed, we would like Chaplain Mary xxxxx to give him a “naming ceremony.” For this, we want Riley’s grandparents (Mike and Judy Zerby, Mike and Jane Charles) and his Godparents (Mark Wald and Christelle Curilli) present.
12. To help us celebrate and remember this special time with our son, 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 (Mike Zerby will take these if he up to it, if not Mark Wald will.)
e. Copy of the birth certificate/death certificate if applicable
f. Hand and foot prints
g. Hand and foot molds (we have kits with us)
h. Lock of hair
i. Hospital bracelets
13. Once Riley has passed on, we will want to keep him with us for a period of time. We would like space to grieve, but at the same time, may need your help with notifying the funeral home, and in making decisions about next steps.
14. We wish to keep Riley with us until he goes for the autopsy. We will have him dressed and we would like a nurse to carry him to the autopsy room. Then we would like him clean and dressed again after the autopsy. A genetic counselor, Shari xxxxx, has recommended that the autopsy be done by Dr. Galen xxxxx at Children’s Healthcare, in xxxxxx or one of his colleagues.
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 truly feel blessed to have been given Riley for his short, but precious lifetime. Thank you and bless your heart for your kindness while caring for our family.