How to Write a Birth Plan
For a Baby with a Prenatal Diagnosis of Trisomy 18
When faced with giving birth to a baby with a diagnosis such as Trisomy 18 or Trisomy 13, the number of decisions can be overwhelming. Yet it is very important that you determine as much as possible about how your baby's time with you is spent, and the care your baby receives. Here is how I suggest you go about making a plan.
List out your thoughts so far
It might be helpful to list out all of your thoughts about what you would like and what you want to avoid. For example, in our case, we wanted to be holding our daughter virtually at all times. We did not want her in the NICU (neonatal intensive care unit) because we wanted her with us, and we did not want her placed on a ventilator. We wanted to keep her comfortable and decided we didn't want to do any surgeries. We wanted our other kids to hold her and bathe her. We wanted lots of pictures and video.
Keep adding to this list - everything you can think of, detailed or general. Having these things down on paper will give you more of a sense of control, knowing you won't forget any of these things.
Separate your list into the two types of decisions
Then it would be helpful to separate your list into the two basic types of decisions to be made in your birth plan:
- Choices about medical care
- Choices about memories you want to make
These thoughts will help you see generally what type of care you prefer. Ask yourself more questions such as:
On the medical side, do you want to do everything possible to extend your baby's life, do you want to make him or her comfortable with no intervention, or somewhere in between? Read over your list and add things to see which direction you are leaning.
There is another medical aspect to consider as well: the delivery itself
. Do you want to monitor your baby's heart rate during labor? Do you want the option of having a c-section if the baby is in distress? Do you want to schedule a c-section from the start to increase your baby's chances of surviving the delivery? Or do you want to have no intervention or monitoring?
On the memories side, what things are important to you? Who do you want to be there? What clothing do you want for the baby and for you? What about pictures and video? How would like you like the medical staff to handle it? Do you want to make hand or foot castings? Do you want to dress or bathe the baby? What other mementos do you want?
Create a list of questions
For each list, create any questions you have to ask the neonatologist, pediatrician, OB, nursing staff, and other parents (via the Trisomy 18 Support Site
) who've made similar choices.
Some questions might be:
For the neonatologist or pediatrician (most pediatricians haven't dealt much with this type of situation; if you can find one who has experience with palliative (comfort) care they will be very helpful):
For your OB:
- What are the options for resuscitation if my baby needs it when born? They range from just rubbing to blow-by oxygen to PPV (positive pressure ventilation) to mechanical ventilation to CPR. Discuss what each one is and does, and decide which is most in line with your wishes based upon your list.
- What types of medication might need to be administered and how? Epinephrine to "jump start" the heart, morphine for comfort, an IV for nutrition, etc. What methods may be used? What is each used for and what would be the result? Again, determine which best fit in with your list of wishes.
- What is a DNR (do not resuscitate) order? What does it mean if I have one? Usually you can sign one at any time; you may choose not to at first and then do so later.
How do you feel about doing a c-section? Many will not do one if the baby has Trisomy 18. If you feel you want (or might want) one, be sure your OB feels the same way. It is perfectly fine to change doctors if their view is not consistent with yours.
For the parents who have already been through this (via the Trisomy 18 Support Foundation Site):
- Why did you choose the care you did (comfort care, ventilation, surgery, etc.)? Why did you choose / not choose a c-section or monitoring during labor?
- What things would you do if you were doing it again? (In our case, having a photographer in the OR for the c-section was an absolute. Having the kids hold her was an absolute. I would have kept her with me longer even after she passed. I would have skipped the eye ointment entirely. I would have a list of the pictures I wanted taken and hand it to someone to be sure they get made.)
Review and Finalize
Read over your plan, discuss it with the proper medical personnel, and revise as needed. Once your plan is finalized, review the final version with your OB, neonatologist, and the nursing staff if possible so they will be sure to follow your wishes. Also, bring a copy with you just in case those caring for you haven't seen it already.
Although the number of choices can be overwhelming, they can also be very empowering. You have more control over the birth and time with your baby than you may realize.
The birth of your baby will be a very beautiful and joyful time, even with the sadness. And having a birth plan prepared will make sure the time you have is spent in the way you most prefer.