Today, March 18th, is Trisomy 18 Awareness Day. The date [3/18] is significant because Trisomy 18 means there are 3 of the 18th chromosome. Trisomy 18, also known as Edwards Syndrome, is a fatal chromosomal syndrome. Because every cell in the body is affected, many different organs and parts of the body can be impacted. Some of the trademarks in T18 include problems in the development of the brain and heart, slow intrauterine growth [intrauterine growth restriction], and clenched fists with crossed fingers. T18 happens in 1 out of every 6000 live births and in 1 out of every 2500 pregnancies. It is the second most common trisomy with Down Syndrome, or Trisomy 21, being the first. In Trisomy 18, 95% of babies do not survive the pregnancy. Of those who do, 50% are stillborn with boys having a higher stillborn rate than girls. Most babies who survive birth pass away within the first month of life. Less than 10% survive to their first birthday.
So those are a lot of facts that I just shared with you. The reason why I’m sharing this, why this is so very important to me, is because I have a son who had Trisomy 18. Our second son, Gabriel, was born last May with Trisomy 18. He was born alive, and he lived for 2 hours — a miracle! He had several of the hallmark characteristics of T18. He had cysts on his brain, a very severe heart defect, was always small throughout my pregnancy, and had clenched hands. And he was perfect. While I was pregnant, he was the most active baby! The ultrasound tech would always comment on how he was the fastest baby she’d ever seen. He was very much alive and well, and we cherished each day we got with him. We knew from the moment we got his diagnosis that we wouldn’t have long enough with our son. We learned to cherish every.single.day, and to treat it as precious as these days are.
We stressed over so many decisions and did plenty of worrying about what would happen. But we also grew tremendously during the 4 months we knew our baby was very sick. I have to say it is the worst and hardest thing that we have ever gone through. We’ve had many really hard and really dark days. But we also became different people, with deeper hearts, a new appreciation for life, and a joy in living each day no matter how hard. Being Gabriel’s parents is a privilege, and we are so thankful for our sweet baby boy.
So today I want to share about our Gabriel’s story because his story is amazing. And I also want to spread awareness of this syndrome that I had never heard of before last year. I also want to reach out to other mamas who have a lost a baby. Whether it’s through a miscarriage, perinatal, or infant loss — we have a bond as mamas who have babies who aren’t in our arms. I would love to connect with you if you have lost a baby or have someone close to you who has. You can read more on my blog or email me at [email protected]
Thank you for reading our story and for loving your friends and family who have lost a baby. Whether it’s T18 or one of many other causes, loss is hard and we all need so much love and support to get through it.
You can find more of our Gabriel’s story on my blog.
You can find out more about Trisomy 18 on the Trisomy 18 Foundation’s website.