Considering Carrying to Term

Making Decisions After a Prenatal Diagnosis Family Profiles - CTT Family Profiles - Caring Saying Goodbye Early

If your child has been diagnosed with Trisomy 18 and you are considering continuing the pregnancy, here is some information that may help you.

It may seem simple to state that you want to continue the pregnancy, but there are still a lot of decisions to make. Do you want frequent ultrasounds to make more memories? Do you want a c-section if your baby goes into distress during labor, or do you want to schedule a c-section to try to improve your baby’s chances of surviving birth? Do you want the heart rate monitored during labor? What type of care do you want when the baby is born? DNR? Do you want to do surgery?

Be sure to talk to your doctor about what you want to do and what he / she feels is best and make sure you are both in agreement. Do not be afraid to speak up if you feel that you or your child are not being given proper respect. Many parents find it extremely helpful to create a birth plan that is agreed upon by all ahead of time. See Birth Plans for examples of plans other families have used.

In addition to the medical considerations, 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 carried to term in the CTT Family Profiles section, as well as lots of stories of families in the Legacy Pages. We also have pictures of many children in the Photo Albums section.

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.

My doctor tells me my baby is likely to be born early. But others have been told their baby may not come unless induced. Who is right?

Actually, it is possible that they are both right. That is, some babies are born early but some need to be induced. Although they all have Trisomy 18, the effects that extra chromosome vary from child to child.

Is there a reason to continue having ultrasounds after a Trisomy 18 diagnosis?
Sometimes physicians feel that there is no need for additional ultrasounds after the diagnosis has been made. There are be several reasons that those ultrasounds may be helpful.

Introducing "Our Child's Legacy" Support 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.

Holding Your Baby Close - Kangaroo Care
March of Dimes Article

Car Seats for Children with Special Needs - Premature Babies
Due to the size of most trisomy babies at birth, standards for premature babies may be the most valuable in assisting you to determine which car seat is right for your child.
 
Rights of Parents When a Baby Dies: Choices or Mandates?
Effective ways of presenting choices to parents at the time of their loss
 
Info on Polyhydramnios from March of Dimes site
March of Dimes: Amniotic Fluid - Polyhydramnios