Flora: 13 Stories of Trisomy 13 | Still Playing School

Flora: 13 Stories of Trisomy 13

By Devany | Labels:
Flora's story is so important to tell.  Her strong mother Maggie says it best, so eloquently, and full of love.

Who do you share your life with?
I share my life with my wonderful husband Alex and my son Elliott. Alex and I have been together for 3 blissful years and married for around 7 months. I was actually pregnant with Flora when we traveled to Reno four our wedding!

Elliott will be 4 on Valentine's Day. He's a smart, sensitive boy who loves his baby sister and isn't afraid to tell anyone about her and about what happened. Aside from me, he keeps her memory alive the most.

Can you introduce us to your baby? What would you most want us to know about her?
My baby's name is Flora. We conceived her in the summer of 2013 and were very nervous and excited when we discovered we were expecting! At our first ultrasound we were told she had a cystic hygroma so large that it was unlikely to resolve itself and, after more testing, determined that this was a symptom of T13. My sweet daughter passed away on her own in September, cradled inside me and (I hope) knowing that her family loved and wanted her so much. I never got to hold her or see her face, but her footprints show us that her feet look just like her dad's. We miss her every day.

Can you tell me a bit about how you learned she had Trisomy 13? 
At our first ultrasound the technician saw that Flora had what is called a cystic hygroma. Basically, the fold on the back of her neck had grown into a large tumor and we were told that this was an early indicator of a chromosome abnormality. I went back a few days later and had a CVS test performed. It's just like amnio except it takes a sample from the placenta and can be done much earlier on in a pregnancy. We were assigned a genetic counselor and about 10 days after the test she called us and told us that Flora had tested positive for T13.

I know this may be difficult, but can you tell us about the choices you made for Flora?  
I think it's important for moms like me to share our story, too even if our choice is not a popular one. I bet there are a lot of women out there with very little support and for whom a L&D is either not possible or not the right choice and I hate knowing that, although they love their babies as much as any other mom, they feel guilty because of the terrible and heartbreaking choice that has to be made.

It was a struggle to decide what to do after that. After a lot of discussion my husband and I decided to have a D&E procedure done. When we went to the doctor's office for the first appointment to have laminaries inserted she told us that Flora had already passed on her own. At this point I was about ~17 weeks pregnant. I honestly didn't think that I could handle seeing and holding my baby girl and keep myself together. I felt that it would take me over the edge mentally. My husband wasn't able to take any time off after she died and I didn't have much support other than him so I was afraid to live with the trauma of labor and face something like that all alone. Truthfully, I don't think a D&E was any easier. I was still extremely traumatized afterward and I continue to struggle in the same ways all grieving moms do. Sometimes I regret it and other times I feel I made the right decision. It definitely wasn't an easy one and it's even harder now because many people don't recognize her death as a loss at all because of our choice. We made our decision from a place of absolute unconditional love for our baby.

What did you choose after her death for memorials?
We don't have a lot of money and, as such, have been unable to afford a real urn for Flora. After we received her ashes in the temporary plastic urn I had my son decorate it with stickers he picked out just for her. I also found a special frame for her tiny footprints that belonged to my mother before she died. She has a special corner on our bookshelf dedicated just to her.

What supports did you have in helping you make these choices?
Honestly, none. My husband and I handled everything as a team and no one outside offered any real help. I suppose it's difficult to know how to offer that to someone who has lost a child, but it was hard doing everything on our own.

How long has it been since you held your sweet baby?
I never got to hold her in my arms, but it has been about 4 months since I last cradled her in my womb <3

Where are you in your grief journey today?
Some days I feel OK and other days I'm filled with anger and sadness and I can barely muster the strength to leave my bed.  I'm still new to this whole thing, having just lost my little girl 4 months ago. I have a long way to go still on this journey.

What advice would you give to other bereaved parents?
Don't let anyone make you feel that your child or your story doesn't matter. I've faced so much of this, even in communities of grieving parents, because we chose to have a D&E instead of laboring and also because Flora was so small when she died. It's unfair and it's damaging and, frankly, it's just not true. All babies gone too soon matter and deserve to be remembered with love and respect.  <3

That is so true, Maggie.  Is there anything else you'd like to add?

Just that I miss my daughter every day.

1 comment :

  1. Thank you for sharing, Maggie. You are a wonderful mommy.