When you receive a prenatal diagnosis of Trisomy 18 or another disorder that is considered "incompatible with life", the news is devastating. You are in such shock and pain that it is difficult to think rationally. Yet, you are expected to make a quick decision about whether to terminate or continue the pregnancy. Often the decision must be made in a matter of days. Every parent makes the best decision they can based upon the information they have available. Unfortunately, sometimes the information that is given is incomplete.
If you have received such a diagnosis, I am so sorry. I cannot stop your pain, but I hope I can share with you some information that I received AFTER making my decision that I wished I had known sooner. In fact, many women express that same sentiment: if only I had known this before. So I hope this information will help make your time with your baby the best it can be and will prevent you from saying the same things later.
If the choice is made to carry to term, there are still other decisions to be made: wait for labor to start naturally, induce near the due date (sometimes labor won't start on its own due to the placenta also being T18), or c-section. Although the options seem overwhelming, I hope that this information, as well as that in the Edwards Syndrome Resources section, will help you sort them out.
Myths about carrying to termFirst, it is a MYTH that it is easier to terminate the pregnancy and "get it over with". Termination does NOT make it easier to move on and get back to normal (ref 1). The reason: because it ISN'T over when your baby dies. The grief is just beginning. So the whole concept of getting it over with is a myth: having a Trisomy 18 diagnosis is devastating and will not be made easier by terminating the pregnancy. You will grieve the loss of your baby either way; once you have the diagnosis there is no way to avoid the pain.
Another MYTH, based largely upon inaccurate information made available to the medical community, is that doctors can tell "how severely" a baby is affected through ultrasound. Doctors can RARELY predict which babies will make it to full term, which will live a few minutes or days, and which will live for months or years.
The presence or absence of a particular characteristic of Edwards Syndrome merely helps confirm the Trisomy 18 and may help the parents determine the type of care they wish to consider. However, many babies with very severe heart defects make it to live birth and live for weeks while many with no obvious abnormalities on ultrasound die in the womb. With a few exceptions, your doctor does not know which group your baby will fall into by looking at an ultrasound.
Another MYTH is that since the baby is going to die anyway, what difference does it make when? Many doctors will not do a c-section on a baby with trisomy 18 because they don't want to put the mother at risk for a baby that is "going to die anyway". If you feel you might want this option, be sure to discuss it with your doctor ahead of time. It has been observed that if a parent feels he / she has some control over the decisions, care, and memories surrounding the baby, it helps the grieving process.
Yet one more MYTH that I have heard numerous times is that it is dangerous to the mother's health to carry a baby with trisomy 18 to term. In general, it is no more dangerous to carry a baby with trisomy 18 than it is to carry any baby to term. The most common cause of pregnancy complications in trisomy 18 pregnancies are those associated with c-sections, as in any pregnancy (ref 2).
A final MYTH is that carrying a baby with Trisomy 18 to term is an awful experience. At first, after diagnosis, when I hated the pregnancy, I thought it would be. But it didn't take long before my feelings changed and I began to love my daughter fiercely. I treasured her every movement because it showed me how strong she was to still be alive despite the Trisomy 18. I became her biggest cheerleader: "you're still alive!" And now I can honestly say the pregnancy and birth experience with Abigail was more special to me than those of my other children, because of the Trisomy 18. Given the choice again, I would carry to term once again.
A personal observation on my part is that I have heard of no one who chose to carry their baby to term who regrets that choice (in fact many have even said "It was SO worth it!"), while some who chose to terminate have been plagued with doubts and regrets. At the time we made our choice, we didn't know many of the things I have shared with you, but we chose to carry Abigail to term primarily because of our faith in God. We chose to let our daughter live out the life God created for her, and we know that choice pleased God. And now that I have seen and learned so many other things, I am thankful for that faith that helped me avoid believing some of the myths I have mentioned.
A birth plan is advised. In it you determine whether or not you want a c-section, comfort care or intervention, and any special requests for making memories. To help you with this, here are some tips for writing a birth plan.
Abigail's Birth Plan. More birth plans are available in the Birth Plans section of the Trisomy 18 Support Foundation site, under "Birth Plans". The Carrying to Term Pages also have several birth plans. The Carrying to Term pages also include a lot of other information for those who have determined to carry their unborn baby to term despite his or her fatal condition. I found that information invaluable.
Although I strongly encourage you to carry to term, you may still be trying to make your decision. If so, the Trisomy 18 Foundation is a place where you can find families who made both choices, where you can read their experiences and ask them questions about what it is really like to live with the choices they have made. The site also includes resources and support both for those choose to carry to term and those who choose to terminate. The site's goal is to support everyone with this devastating diagnosis and to help them all grieve and heal, regardless of their choices.
Regardless of the choices you have made, if you have received a Trisomy 18 diagnosis, you are hurting. And God is hurting with you. He wants you to receive healing and grow closer to him. If you would like to know more about God's role in this trial you are going through, see Where is God?.
I am so sorry you have received a diagnosis like this, but there is hope. You can get through this. And I hope I can help you along the way.