I carried my daughter even though she had a life-limiting diagnosis.
I was 16-weeks pregnant when my OB called and gave my husband and me results that no one wants to receive.
Our daughter was diagnosed with Trisomy 18 also known as Edwards Syndrome.
Our hearts were broken.
Trisomy 18 is a rare, life-limiting diagnosis that occurs in 1 of 2,500 pregnancies that most medical providers describe with the medical literature as “incompatible with life.” It is a condition that causes severe developmental delays due to an extra chromosome 18.
We were referred to a maternal-fetal doctor to evaluate our next steps.
At our appointment, we were asked, “You do not want to terminate, correct?”
We both agreed we did not want to terminate our pregnancy.
Although I knew that ultimately, losing her would be devastating, and it would break my heart, she deserved to live whatever life she was given.
This has brought us so much pain, but her life has also brought us so much joy.
Our baby girl was so sick, and she had every odd against her.
Although this diagnosis in medical terms is “incompatible with life” and she was not expected to live, she did live. She had a heartbeat just like me and just like you.
At 22-weeks, I went in to the doctor for a check-up, only to find that my sweet girl no longer had a heartbeat.
She may not have had the life I had planned for her, but she lived.
It has become so important to me to make her life known. It may have been brief, and it may not have been the life I had planned for her, but she had a purpose. Her life had meaning. Her life mattered. Advocating for her has become my most important job.