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Saturday, July 8, 2017

Trisomy 13 - The Day After Our Heartbreaking News


First of all I want to thank EVERYONE for your messages, comments, and positive thoughts. The outpouring of love and support from friends, family, and blog readers was and continues to be indescribable. Know that even if I haven't had time to respond directly to you, that your message was read, and is in my heart. All of your words have been as uplifting as they can be. So, thank you.

Our journey is far from over, and I am still stunned at our news with so many questions and so many thoughts. In time, my questions will be answered, and we'll have our plan in place. For now, I sit in limbo just taking it all in and figuring out how to move forward.

I guess I never officially announced it on the blog, but here are my words from yesterday that were posted to Facebook that many of you saw:

"I don't know how to say this, and I'm not ready to really, but I know there are so many of you waiting on the news.

April Rey was diagnosed with trisomy 13 today. We've shed more tears than I can count, we've talked to our families, and we've told Caroline.

At the beginning of next week we start the process of talking with a genetic counselor, and learning about our options. This is a fatal condition, so it's just a matter of when, really.

We are discussing ways to honor April Rey, and will continue to update everyone as we know more details. Thank you for thinking of April today. Thank you for your love and support. My husband and I have the honor of being parents to two wonderful daughters. Caroline is already an amazing big sister. We will always keep April alive in our hearts."

We chose to do the amniocentesis procedure, because it is a diagnostic test. It takes all uncertainty and doubt out of the equation. The amnio confirmed that April Rey does in fact have trisomy 13. So, while her body still looks perfect on an ultrasound, her fetal cells indicate that that is not the case.

From my understanding, the ultrasound does not always show abnormalities this early in a pregnancy (we are 15 weeks). It is possible that the abnormalities would be seen as we progress, and it is possible that we would not see any defects until April Rey is born. This is the part that is incredibly hard for me. I know the science behind the amnio is correct. I know it's right. But, my baby girl looks perfect. She moves and wiggles, and her fingers and toes and brain and heart all look fine on the screen. My heart is having a hard time accepting that this perfect baby has such a devastating chromosomal abnormality.

On Monday I'll receive a phone call from a genetic counselor. I am not sure if I'll be told to schedule an appointment, or if my questions and options get discussed on the phone. I was too distraught when the doctor told me the news to find out that detail. I just know I'll receive the phone call. And I know I have so many questions.


I am guessing it's highly unlikely, with such a devastating condition that affects most major organs, but I want to know if there is a chance that April could donate her organs. If she has any part of her that is viable, I want to know if those parts can go to other babies and save their lives- help their mothers and fathers find hope. It is probably a long shot, but it is something I want more information on.

If the above is plausible, I also have to factor in how much pain our baby would be in if she were to make it to term and be alive with such defects even for a short time. I am not willing to have her in pain. I do not want her to survive on machines, unable to be held, etc. I want peace for her and our family.

I think about the chance to meet her. One moment forever in our hearts. I would love that dearly. But again, if it inflicts any pain on her, I'd sacrifice that option.

Maybe none of the above is plausible, in which case we'd be looking at an induction to terminate the pregnancy. Or we could wait. Wait for her life to end on it's own- trisomy 13 babies often don't make it to term. 

Will she get a birth certificate? I'm guessing it depends on the week that she dies. I don't know the answer.

Do we have the option to terminate after a certain week with a condition like this? Do we have to make a quick decision? I have no idea.

I've never read about these things before. I'll soon know our options, however.

Regardless of what happens, we know that we want April Rey to go to a good cause. My husband and I have both chosen to donate our bodies to science when our day comes, and we will do the same with April in the hopes that we can learn from her and advance our scientific knowledge.

As I type this, I can feel her kicking. She's still very much alive inside of me, and I am holding onto every bit of that energy for now.

Our daughter, Caroline (2.5), is asking a lot of questions. We like to be upfront with her, so we immediately told her that April was sick and that we'd eventually have to say goodbye. Her initial response was something to the effect of "Ok, let's go for a walk". LOL  We did just that, and Caroline took care of us last night in her own little way. She's obviously too young to understand, but she's old enough to put some of the pieces together. She's lost a dog (Chelsea), and she knows that Chelsea got sick and we had to say goodbye. She knows that Chelsea died. And, she's slowly connecting all of the pieces and relating April to Chelsea. The questions are hard, however, and I try to keep most of my answers simple so she can attempt to understand:

"Is the baby sick?"
Yes, Caroline she's sick.
"Will she get better?"
No.
"Why?"
She's just not built right.
"Why is she not built right, Mama?"
It's nothing anyone could have prevented, Caroline. She's just not right. 
"Why?"
Her chromosomes didn't line up properly. She has an extra one that she shouldn't have.
"Why?"
I don't know. I don't have an answer for that. 
"Did my chromosomes line up right, Mama? Did yours and Daddy's?"
Yes sweetie, they did. 
"Do we have to say goodbye?"
Eventually, yes. But not yet.
"Where will she go?"
She'll go where Chelsea is.
"Where is Chelsea?"
I don't know. Some people believe in Heaven. I can't say if it's a real place, but I hope so. And I know her energy is alive somewhere. Energy is neither created nor destroyed. April's energy will live on, as well. 

The questions come and go all day long. My love of science always shines through in my answers, and my tears show up as we talk. She repeats the same questions over and over as 2 year olds do. I answer them the best way I can. Caroline hugs me and responds to my sadness in such a selfless way. We talk about April and will for the rest of our lives. We still talk about Chelsea daily (after over a year), and we'll do the same with April. She is forever our daughter, forever Caroline's sister, and forever in our hearts.

We don't know how we'll honor her life yet, but we will. We are already brainstorming ideas like planting a tree in her memory, and I'm already trying to find inspiration for a tattoo.

I also know that this blog is a true gift at the moment. Writing has become so healing to me, and this blog has grown enough that it is reaching people. This blog is a voice. I plan to make April a part of that voice. Our trisomy 13 journey will be documented here, and I will be accepting stories from other parents as well. The more information we can collect on this blog, the more my heart will be happy. If you have a trisomy 13 story and journey to share, please contact me on this page. I would be honored to share your journey. And, if you have ideas on how to honor April, or any organizations you'd like me to know about, please also send those my way.  Thank you again for your support and uplifting thoughts. I am forever grateful for all of your messages.

Visit the trisomy 13 page, for all of the posts on April Rey and trisomy 13.




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