This is a very difficult time, and unfortunately there is no magic choice that will make this experience easier.
Take your time and learn as much as you can so you can make informed decisions.
If you have been diagnosed while you are pregnant:
If you have positive results on a screening test we recommend that you discuss this with your doctor and a genetic counselor. Your medical providers will talk about diagnostic testing options with you. The decision about whether to have these tests is up to you. If a diagnostic test comes back positive for Trisomy18, the results should be discussed with experts, including a medical geneticist, a genetic counselor, as well as your own doctor.
Learn More: Expecting a Child
If your child was diagnosed after birth:
If your child was diagnosed after birth, your child will be receiving specialized care from the hospital and his or her doctors will be helping you learn how to best care for your child .
Learn More: Caring for a Child
After the Diagnosis:
- Take your time before making critical decisions
- Ask questions and ask for explanations of anything you don’t understand
- Know as much as you can; make sure the information is current
- Read other parents’ stories
- Be informed about medical conditions
- Know it’s okay to grieve the loss of the child you envisioned
- Share with other parents in our Online Support Community
- Know that every pregnancy and every child is different
- Find medical professionals who are on your side
- Find support
Remember, whatever happens, you are still a parent!
Additional Reading:
NIH FASTER Study Concludes First Trimester Screening is Better Than Second Trimester Down Syndrome Screening
First trimester Nuchal Translucency/freeBeta/PAPP-A prenatal screening for chromosomal disorders (Downs, T18/T13) has been confirmed by the NIH FASTER Study to be more effective than second trimester screening methods.
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 two articles to help you.
Rights of Parents When a Baby Dies: Choices or Mandates?
Effective ways of presenting choices to parents at their time of loss
Information on Accuracy of Maternal Serum Screening Test
NYTimes on study about risks of subsequent pregnancy too soon
The Problem of Decision Making While in Shock
Why it is important to stop and process the news of Trisomy 18 before making any quick decisions
What to expect from Genetic Evaluation and Counseling
This is a link to an article on what you can expect when referred to a Genetic Counselor within the limits outlined in the articles disclaimer
