Trisomy 13- My Worst Fear That I HATE Admitting

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Trisomy 13- my worst fear that I hate admitting and why we are leaning towards termination for medical reasons.

There are a lot of people following this journey with us, and I am so very thankful that everyone is allowing me to write what is in my heart without judgement. All of the responses on my FB page and on the blog have been supportive. I think most that read these posts realize that until you walk the path, you have no idea how you’d feel, and so there’s been this outpouring of love and sympathy as a result.

I so appreciate that. I appreciate being able to write a post like the one today, and feel secure that people will rally with me, not against me. These feelings are things that I truly hate admitting to myself, much less the entire world. But I’m terrified to feel this way partly because I feel so alone. So if this post reaches someone else that is feeling alone, then it is worth publishing. 

So Here it Goes…

The Worst Fears that I hate Admitting About this Trisomy 13 Diagnosis

The option to carry to term is out there. I could meet April Rey. She might be alive and we could have a few moments together before she dies. I know we wouldn’t take any life saving measures. We’d let her go peacefully if we decided on this option. I have a hard time leaning toward this option because of my worst fears, however.

First, there are the “what ifs” that we think of that make me WANT to carry to term and find out….

What if she is the miracle child with nothing wrong. What if she proved all these tests to be wrong and was a normal healthy baby? It’s probably less than a one in a million chance, but what if…?

Then there are my WORST FEARS…

What if she is in pain?

And the fear that I hate to admit but it’s there….

Trisomy 13- my worst fear that I hate admitting and why we are leaning towards termination for medical reasons.

What if she doesn’t die? What if she’s got severe disabilities and will have a horrible quality of life, yet is staying alive without drastic measures? What then? What did I just do to my child?

My worst fear is that she doesn’t need life support, and that we can’t just let her go peacefully… but that she’s got severe deficits making her quality of life horrible. My worst fear is that I put that on her by carrying her to term when I could have let things end peacefully for her, had I only chosen to terminate and end her life peacefully.

That is a horrible thing to have to think of as a mother. To be fearful that your child will live. It is such a horrible thing to think, except that is my reality right now. If I make the wrong decision, April Rey would have to live with it the rest of her life. I don’t want that for her. I don’t want her in pain. I don’t want her to have a life that is confined to a hospital. I don’t want her to be unable to walk, talk, or eat on her own. I don’t want her to have a life without the ability to be happy, to grow, to love, to learn.

I have so much guilt for even thinking those thoughts… but I have so much fear that I can’t not admit them to myself.

And then there’s my hope. The hope that I also hate to feel, and hate even more to admit.

There is a place in my heart that is hoping to find defects on her MRI. There is a place in my heart that is hoping her ultrasounds start showing the devastation. Because if they do, then we can let her go in peace. We can know our path. Our decision can be made clear.

Because the reality is that the amniocentesis is probably not wrong. It is considered a diagnostic tool for a reason. It diagnoses. It doesn’t just say that we have an increased risk like the blood work, it says that she HAS trisomy 13- full trisomy 13. It’s not wrong. My brain just can’t accept it without the visual proof somewhere, somehow- on an ultrasound or on an MRI. I need something more.

If these tests don’t show anything, then we are faced with the choice of carrying her to term… maybe she’s the miracle child, or maybe my worst fear is fulfilled and my daughter lives with a horrible quality of life, or maybe she’s in pain before she dies, or maybe she’s not in pain and dies quickly.

There’s only one good option, and I have no control over anything. No control of our outcome. My hopes and fears are things that a mother should never ever have to experience. I hate the thoughts in my head. I hate the position that we’ve been put in. I hate everything about this and I feel like I can’t breathe. I love April Rey so very much.

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

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Hi there! I’m Katrina (aka Mama). I am a former engineer and chemistry teacher, turned stay at home mom and mom blogger. I have been blogging since 2015, and have taken my love of engineering and science, and tried to applied many of the same methods to my parenting adventure.

I have a huge passion for Babywise and prioritizing sleep for our children. I am mom to 3 (including one angel baby that had trisomy 13). A huge mission of mine is to share her story and legacy. I am a big believer in being real and doing what works for YOUClick here to subscribe to my weekly newsletter to follow our story. 

This blog is intended to be our story and our ideas- including successes and failures along the way. You can also find me published at Today Parenting, Her View From Home, VitamedMD, Love What Matters, and The Mirror. Follow me on Facebook and Pinterest for more parenting tips and to hear more about our journey!

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