Let them write their own story

My first-born daughter, Isabella, was diagnosed with a rare genetic condition called Trisomy 18, also known as Edward's Syndrome. Allowing her to write her own story has been the greatest honor of my life.

 By Missy Enaje

Where do I begin? I am releasing a book I dedicated to my daughter, Isabella. I completed the book before she was born and wrote it in honor of her. I also discussed the rare genetic condition she had called Trisomy 18, which affects the development and viability of a child. While no cure currently exists, medical interventions have proven to extend the child's life at the risk of the child's quality of life. There is no middle ground: it's one hard decision vs. another hard decision. 

Isabella was born 41 weeks + 3 days, about 11 days past her due date. She survived 2 miraculous months outside the womb and impacted the lives of countless others, including those whom I speak with today. During the time of my pregnancy and throughout my daughter's stay in the hospital, I wrote about her life knowing the hard truth of the uncontrollable and the fate that would await us. I talk about this journey with a badge of honor, especially to other mothers who are scared and facing the cruel results of the same diagnosis or similar. 

So I write now, just to vent. While I respect a woman's bodily autonomy to the full extent, my heart also breaks when the life of a child with a chromosomal diagnosis is terminated. I respect and love the mother. I just hate the action. As much as I understand how hard the decision is and how much grief and trauma it brings to a family, it makes me think of Isabella and how she ultimately wrote her own story. 

In just two sweet, yet short months of life, her impact is profound. These are words spoken to me, her mother, not words just spoken out of my mouth. I witness it through the medical care staff, doctors and volunteers who met Isabella. I can't imagine cutting her life shorter than it already was. 

Let's be clear here. Not every Trisomy baby makes it to term. Not every Trisomy baby gets two months of life. Some Trisomy babies make it to years of life through the integrated medical interventions needed to extend their life. For some, that looks like open-heart surgery, a tracheostomy and a feeding tube. Again, no two children are alike, just like no two women and their pregnancy are alike. We are all born with our individualities. 

To be even more technical, depending on the genetic makeup of a child with Trisomy 18, some babies only have partial cells with the extra chromosome, some have full (like Isabella), and some have a mixture of cells, which is called a mosaic condition. The viability of a child is sometimes linked to the number of cells affected by the extra chromosome, but not always. If a child only has partial cells affected, my understanding is that through medical interventions, a Trisomy 18 child can thrive despite the disabilities.

Upmost respect

I have the upmost respect to the women I've encountered on the internet who carried their baby to term or carried their baby until it was time. A time they... a time we... have ultimately no control over. Please understand how babies are resilient. Even more so as a Trisomy baby. They are WARRIORS. They break boundaries every day and when I hear or read of the choice to terminate, an extra layer of sadness is what I feel for that child and that family. 

We have got to understand that quality of life and not allowing one's child to suffer are languages of love. I will never tell anyone how to parent. Creating life is a sacred gift and this diagnosis is a path of motherhood I wish upon no one. 

I just want to encourage these women to not give up. The road ahead is not easy and easy may be a word never associated with our lives ever again. I want to hold their hand and just show them, how like Isabella, each child deserves to write his or her own story. 

It will become the best story you have ever lived to witness because your child wrote it and no one else. It's sacred. It's heartbreaking. It is ultimately a love story. I will always speak of Isabella and how honored I am to have been chosen to be her mother and protect her soul and believe in her capability to shine. 

I love you, Isa.