When sharing the news that your child has been diagnosed with Trisomy 18, many people you encounter may be unfamiliar with the condition. Even though it is considered rare medically, Trisomy 18 is a life-threatening genetic disorder that impacts about 1 out of every 2000 pregnancies in the U.S.
Often, people will make assumptions about what a diagnosis like Trisomy 18 means or what you may be thinking, feeling or experiencing based on their lack of familiarity with Trisomy 18 and conditions like it. But there are many things parents in the Trisomy 18 community wish people knew about this experience. Here are 10 things that parents have shared that they wish people knew about facing a Trisomy 18 diagnosis.
10. Advocating for our children is our most important job.
“These special, amazing and incredible children MATTER. They deserve every chance to live a beautiful life. It will be our duty as parents to constantly advocate for our children and fight for them.” — Narleen
9. There is pain that comes from having a child diagnosed with Trisomy 18 but there is also great joy.
“One thing to know that through all the fear and pain is that a beautiful child will bring more to your life than you would have ever known possible.” — Sonya
8. Don’t pretend our children don’t exist simply because you’re uncomfortable. Talk about our children. Say their names. Remember their birthday (and the anniversary of their death). Talk about their beautiful smile. It doesn’t matter what you say—what matters is that you acknowledge them
“What I wish people knew about Trisomy 18 is that it is important to speak about our babies and honour them in any way possible. Our babies are such brave little fighters and it means more than people know.” — Adam
7. Our lives are forever changed by by this experience. We will never get back to “normal,” and we don’t even want to. Don’t expect that.
“Even though my son died, my life is forever changed by him. He was the missing piece of the puzzle in my life. Meeting him, for even two days, made me better.” — Kristin
6. We love our kids just as much as anyone else does. Period.
“I wish people knew that although these babies have Trisomy 18, they are very much as precious and loved as any other babies. Saying that it’s a blessing our baby died soon after birth is not comforting. We would have gladly spent our lives looking after her, however tough it might have been at times.” — Wendy
5. Don’t talk to us about “quality of life.” Our children’s lives aren’t measured by other people’s ideas of what kind of life is worth living. We are grateful for every moment we have with them.
“How hard it is to hear ‘no quality of life.’” Excuse me! EVERY moment the mother carries the baby is a quality of life. Every moment the heart beats is a quality of life. Every moment a breath is taken is a quality of life. Love of God’s precious Trisomy angels can not be measured or rated!” — Kathleen
4. Trisomy 18 is not incompatible with life. Hearing these words are so painful, and this view of the condition prevents healthcare providers from treating children with Trisomy 18 as individuals. We can do better!
“I wish the medical field/people knew that they were not incompatible to life because they’re not.” — Josh
3. Don’t give up on our kids. Feeling like you have to constantly fight for access to care makes an already difficult situation more challenging.
“I wish that the medical profession would not give up on these kids. My daughter is 14 and the biggest burden has been the constant fight to get her access to the basic rights of any human being.” — Jill
2. Contrary to the expectation that many people have that this kind of diagnosis or loss will automatically make you angry at God or question your faith, for many parents, this experience deepens their spirituality and relationship with God.
“This may not have been what we would have chosen for our child, but we know that God makes no mistakes, and that He has only good plans for her life. We are so thankful to be her parents and to be able to care for her!” — Amy
1.This experience?
“Worth every second.” — DeAnna