Considering Saying Goodbye Early
If your child has been diagnosed with Trisomy 18 and you are considering interrupting the pregnancy, here is some information that may help you.
If you are considering terminating your pregnancy, there are several things you should consider. First, you do not have to decide this in one day. Even though the average cutoff for terminating a pregnancy is 24 weeks, the actual date varies depending on which state you are in. Ask your doctor what the cutoff is for your state, but also be aware that other states may have later dates, so you do not have to decide before you are ready.
Second, there are two primary options for interrupting the pregnancy: early induction and D&E (Dilation and Extraction). These two options are quite different; the first being a labor and delivery experience and the second being a surgical procedure. In some locations, both options may be available. If so, you need to determine which approach will best help you with your own grieving process. Some parents find that having an early induction that allows them to hold their baby and have pictures and other mementos is helpful to their healing. Others find it more painful to go through labor and delivery and see their babies and so prefer the surgical procedure.
Some facilities cannot perform these procedures and so a D&E may have to be done at an abortion clinic. Be sure to talk to your doctor about which options are available to you where you are located and ask for specifics about what each experience will be like. If the available options are unacceptable to you, it is important that you let your doctor know so you can explore other options, such as going to a different facility or location, or even whether carrying your baby longer may be the best option for you (see Carrying to Term for more information about this option).
Do not be afraid to speak up if you feel that you or your child are not being given proper respect. Some parents have found that their health insurance plans initially did not want to cover their termination, so you may want to check with your insurance company about that as well. Often, upon appeal, insurance companies have paid.
In addition to the medical considerations, some families have found it difficult to share their decision with family and friends, and some have spent a great deal of time wrestling with the spiritual issues that this decision raises. Another thing to note: while interrupting does end the pregnancy sooner, it does not lessen nor shorten the grieving process afterwards, for you are still grieving the loss of your precious child. It is important to also consider these emotional issues while making your decision.
It is often helpful to read stories of others who made these choices and how they feel about their experience. We have some stories of families who chose to say goodbye early in the SGE Family Profiles section, as well as stories of families in the Legacy Pages area.
We also have an online community where you can interact with other families and ask them questions directly about their experiences. See the Online Support Community home page for more information about this community and how you can join it.
Here is some additional reading that may be helpful:
Celebrating your child
Suggestions for ways to celebrate the life of your precious child.
Introducing "Our Child's Legacy" Program
The Trisomy 18 Foundation is excited to announce a new program for supporting parents of children with Trisomy 18. Called "Our Child's Legacy", this program provides parents with an easy way to create a website for their child, including a photo album, guestbook, and friendly URL to share with friends and family.
Information regarding Chromosomal Abnormalities in Multiples
To have one baby with trisomy 18 is hard enough. To find out that you have twins or triplets and that one is affected by trisomy 18 makes decisions and treatment options all the more challenging. Here are 2 articles to help you.
What Do You Mean It's Not Covered?
Discussion about getting insurance to cover procedures, particularly addressed to caring for a disabled child but applicable in other areas as well.
Saying Goodbye Early Booklist
Books about saying goodbye early
Understanding reasons for and information about therapeutic abortions (termination for medical reasons), including methods and risks.
Rights of Parents When a Baby Dies: Choices or Mandates?
Effective ways of presenting choices to parents at the time of their loss
NYTimes Article: After Ending Pregnancy, Ripples of Pain
Parents who have experienced the joy of bringing a healthy child into the world can hardly imagine the pain of losing a baby, even one not close to being born.
Review of surgical aspects of termination
Very clinical discussion of the methods and risks of terminating a pregnancy. This article is not limited to therapeutic abortions and may not be helpful unless a very factual approach is desired.