By Heather Morgan
It is important to stop and process the news of Trisomy 18 before making any quick decisions.
Maybe it was just this morning. You sat in the doctor’s office after your ultrasound. There had been too many long, awkward silences. You knew that something was wrong. Maybe it’s spina bifida. You’ve heard of that. You’ve seen the adverts about taking folic acid to prevent it. Or maybe its Down syndrome. What will we do if its Down’s? you thought. Then the doctor walked in with a nurse, a social worker, a chaplain, somebody else. The dread flooded your heart. Then the doctor started talking … choroid plexus cysts, or something about a heart defect; small in gestational size; clenched fists, clubfoot. Then he said “you need to have an amnio I think your baby has trisomy 18. Very few of these children ever live.”
Or maybe it was this afternoon when you received the phone call from the doctor’s office. You know the one. It’s the one you’ve been waiting for and dreading since that needle pricked your abdomen and the fluid was slowly drawn out. The nurse says quietly, “It’s positive. I’m sorry.”
Now you sit here. You’ve found this site, so you are looking for help. You’ve been given a diagnosis you don’t understand. Only two options: terminate almost immediately or carry a child into the unknown. The choice couldn’t be harder. The timing couldn’t be worse. The reason is simple: you are in a state of shock, the same shock that paralyses parents when the police knock on their door in the middle of the night to take them down to the hospital when their child has life-threatening injuries. You can’t sleep or maybe all you can do is sleep. Either you find that you’re eating all the time or you could care less about food. (I know one woman who lost 16 lbs in the days she waited for her amnio result because she was so worried). Regardless of how it shows itself, shock is real, and it colours your decision-making capabilities, inhibits them. Your very most basic response is “RUN”—get away, hide, somehow get out of this experience.
You have been bombarded by pain and emotional agony worse than you may have realised was possible. And now, in the midst of this, you are told that you have a choice to make. To hear someone suggest that you terminate the life of this child that you have hoped for, dreamed of, desired for so many years, perhaps, is almost unthinkable. Yet the prospect of twenty further weeks of pregnancy, each day open to the uncertainty of whether your child will live through the pregnancy, through birth, for how long? What will they be able to do? Will they talk? Walk? Are you subjecting them to pain by wanting more time with them? The questions would be agonizing if you were in a course on morality. As it stands, this is no arms-length, intellectual discussion.
This is your child.
So what do you do now? First, stop. Don’t make any hasty decisions. Before you make a choice one way or the other, get away. Take vacation time. Take a long weekend. Get away with your partner or spouse and no one else. Go somewhere relaxing—a country inn, a bed and breakfast, camping, whatever works for you. Just get away from it all. And once you have done that, grieve. Let out all of the emotions the pain, the anger, the accusations, the tears. Talk to your partner. Write in a journal. Take a walk and scream at God, at the sky, it doesn’t matter.
Second, find out firsthand what it means to choose each option. Talk to the people on this board: those who have terminated, those who have carried to term. Discover what has hitherto been unexplored territory for you. Don’t be afraid to ask the hard questions. Everyone who has been there has probably asked those questions already, and would love to tell you what their experience has been, now that they’re on the other side. If applicable, also consult wise guidance from trusted family, friends and religious leaders for their input.
Third, talk to your partner at a time when there are no other distractions. Find out how each of you feel about each of your choices. When my husband and I were attempting this process ourselves, we had the following idea suggested to us: if you disagree, go with the choice that is most easily reversed. In other words, if you don’t know, or disagree over whether you should resuscitate a child or not, then begin the process and you may later decide to abandon it. You cannot undo death, and at the end of the day your relationship with your partner is exceptionally valuable. Make sure that you agree on these issues before you make them public beyond the two of you.
Finally, once you have made your decision, whatever it is, stick with that decision and with each other. Unless both of you change your mind (its definitely been known to happen) don’t allow other people to coerce you into doing what they think is right. They are not walking in your shoes. Even those who have experienced a trisomy diagnosis in the past do not know where you are as you begin this experience.
This is such an agonizing time. I extend my congratulations on your pregnancy, on the child that is within you, and all of his or her potential to impact the world. And I share with you the pain of this diagnosis, of the unforgettable outcomes.
I pray for peace for you in the midst of this time, and hope that you will find the support and encouragement you need from those here to make your journey the best that it can be.