If you are pregnant with a baby with trisomy 18, then you probably have two major questions in your mind:
- How long will my baby live?
- Will my baby suffer?
These two questions inevitably lead you to ask perhaps one of the hardest questions you may ever ask, “Should I continue this pregnancy?”
In this episode, we’re going to talk about actually carrying a baby with trisomy 18. How do you address all these questions and how do you and your family prepare?
Should I continue my trisomy 18 pregnancy?
Some of the questions I get asked the most from parents who are expecting a baby with trisomy 18 are, “Will my baby with trisomy 18 survive?”, “Is trisomy 18 always fatal?,” “What can I expect at delivery and how can I best prepare?”
The first question you have to answer if you receive the diagnosis of trisomy 18 is whether or not to continue the pregnancy. This is a choice that only you can make. And there are a lot of opinions each way.
Remember that you and your team have to make this decision for yourself and the right or wrong answer lies with you, not with us. So it’s going to be your provider’s job to deliver this diagnosis as compassionately as we can. We want to give you all the information that you need to make the right call for you.
Whether you elect to terminate your pregnancy or whether you continue, that’s the right decision for you. One of the questions we’re going to ask is what is your goal for this pregnancy?
What is the life expectancy for a child with trisomy 18?
Life expectancy for a child with trisomy 18 is somewhat limited. Back in the day, trisomy 18 was considered a lethal condition. We didn’t provide any surveillance or intervention for these pregnancies. We didn’t do ultrasounds to look at growth. We didn’t routinely monitor the baby’s heartbeat in labor.
We just let nature take its course. Sometimes the baby was stillborn, since there is a much higher chance of stillbirth in babies with chromosomal abnormalities.
The story is a little bit different now, since we know that babies with trisomy 18 are sometimes able to survive for longer periods of time, sometimes years. We now try to take our cue from you, the parents, based on what your goals are for your baby. Typically, that goal is simply to have a liveborn baby that you can hold and spend as much time as possible with.
You need to be realistic about your expectations. Babies who have trisomy 18 do have limitations in how long they’re able to live. They also vary a lot depending on whether or not birth defects are present. There is still some controversy about whether or not to repair major heart abnormalities in babies who have trisomy 18.
You will want to have very clear and explicit conversations with your provider and even contact a pediatrician or neonatologist to talk about these things and ask those questions.
In terms of life expectancy for babies with trisomy 18, it varies a lot.
For instance, with Kristen’s baby, Hannah had a heart abnormality, which was repaired. Hannah had a VSD or ventricular septal defect. Hannah still passed away at about four months of life with a respiratory illness. But many babies who have trisomy 18 survive for years. And some pass away in the first few days of life.
One thing that we tend not to talk about which I think we need to is your quality of life and the quality of life for your family including other children and extended family that might be caregivers.
Because all of our conversations tend to center around what it’s like to care for your baby with trisomy 18 and focusing on their quality of life, your own quality of life, and the quality of your family life can be overlooked.
It’s a delicate and difficult balancing act, but it’s something that I really want you to think about because it’s important to care for your baby with trisomy 18, but you can’t do that if you’re not also taking care of yourself.
I hope I’ve answered a lot of your questions about trisomy 18, and what it’s like to carry a baby, have a baby, and care for a baby with trisomy 18.
This is a topic I plan to return to because it’s so complex and nuanced. There is just no end to the questions surrounding this important topic. Please leave me a comment below if you have any questions about trisomy 18 that I did not cover.