Pregnancy After A Life-Limiting Diagnosis & Infant Loss | Q&A with Amanda Gilmore

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I am honored to share an interview with Amanda Gilmore about her experience with pregnancy after losing her infant daughter Riley who was prenatally diagnosed with Trisomy 13.

Amanda, thank you for sharing your story with us. We are so grateful.

Hi Amanda, tell us about your loss.

My daughter, Riley, was prenatally diagnosed with Trisomy 13. She's our first child and we fell in love with her from the moment we knew I was pregnant. At the time we got the news of her diagnosis, we were shocked. We didn't even know these types of diagnoses existed, and certainly never expected that we'd become some of the few people to hear those words from our doctor. Termination was presented to us many times, but we already loved her. She was alive then, and we didn't feel like us choosing when her life would end would bring us any comfort. We wanted to give her any chance we had. We wanted to know her.

On May 6, 2020, our beautiful girl was born. Every worry and stressor we held onto for five months just faded away. It's like none of that mattered because she was here. We spent three weeks with her in the NICU, and we were lucky enough that the hospital let us stay in her room with her 24/7 during that time. They understood that we'd want to be there as much as possible, and with Covid, they found it best that we stayed at the hospital to limit exposure coming and going. We were so thankful that they made that happen for us.

At the end of May, we got to bring Riley home, and that was an absolute treat. We actually did set up a nursery for her, when we initially thought we might not because we knew it would hurt coming home with empty arms and seeing a full nursery. During pregnancy, I started to feel like I needed to treat her as I would any other baby and needed to give her a place that was hers. She was our first child, so we would have had nothing if we didn't prepare. I know that we did more than many families in our shoes would do, but we were so thankful that we actually did get to use almost everything we had. Riley loved her room. She always knew that's where she was meant to sleep and was always so calm and happy there.

Her time at home was both joyful and stressful. We were thrilled to be able to give her "normal baby" experiences. We took her on walks around the neighborhood every day, watched movies together on the couch, played with her, and she got to meet friends and family socially distanced (through the sliding glass door to the backyard). She was held by her grandparents and was so incredibly loved. The stress was due to the obvious medical battle we faced. She came home on supplemental oxygen and a feeding tube, which we learned how to manage, but definitely came with its challenges. As she grew, more symptoms of things just not working quite right in her body would become very clear to us. We had always been on the plan that we wanted to do everything we could for her "within reason". We wanted her to receive the basic care and nourishment that any child would receive while maintaining moderate interventions. We weren't comfortable going all-in with interventions, unsure of how much time we'd have. We really wanted her to experience life as much as possible. One of our favorite memories with her was when she was three months old and we took her to our family cabin. She went to the beach, felt the sun on her face, and just soaked up vacation. Never in our wildest dreams did we expect that we could take her on that trip, but we made it work and my heart is so happy that we did.

A couple of weeks after that trip, those symptoms we were seeing seemed to get a bit more prominent. I won't get into the details, but we had started lining up specialists for what felt like every function of her body to meet within the coming days/weeks. One night, things took a turn, and we felt like we were at the end of her life. It was very sudden for us, as we thought we were going to manage what had been happening for quite some time. A day and a half later, Riley took her last breath. That moment was absolutely sacred. We had feared so much of when that time would come and how it would happen, but it was peaceful. We can called all of her grandparents saying they should visit, and by coincidence, they all came at the same time, and Riley took her final breath within 10 minutes of their arrival. I'll never forget what it felt like to feel her life leave her body while she was in my arms. I felt a sense of relief that her battles were over, and peace knowing she was free from harm.

We miss her more than we could ever articulate, but we're joyful in knowing she did have a good life.

I'm surprised how much guilt, pain, and sadness I feel.
There is some hope,
but I've felt completely overcome with
such intense emotions longing for Riley more.

What surprised you about pregnancy after loss?

I'm 10.5 weeks along, and I'm surprised how much guilt, pain, and sadness I feel. There is some hope, but I've felt completely overcome with such intense emotions longing for Riley more. I am excited for this next baby and love them as their own individual person, but I have felt more emotional than I would have ever expected.

That this baby doesn't replace Riley,
and never will.

What's one thing you wish people understood about pregnancy after loss?

That this baby doesn't replace Riley, and never will. This doesn't mean our story has a happy ending - we still won't feel whole until we're reunited with Riley. This doesn't mean we don't love the second baby, but we cannot feel whole without our first. Also, getting pregnant after loss doesn't mean we love Riley any less. A few family members have said, "we didn't expect it to happen this fast" but they don't realize that not only are we grieving our first and only child, but we're doing so in a pandemic. We're stuck at home - we have no distractions. We cannot see anyone. We don't have other children to hold and nurture. Sometimes it feels like we just exist, and so it feels more purposeful to try again, to be open to new life, and to honor Riley by making her a big sister.

How did you know when it was the right time to try to conceive again?

We just felt like we were open to new life. We felt like any sooner would have been too soon, but we knew we wanted a child in 2021, and so we knew we'd have to start trying again soon if that was going to happen.

Did you experience fear and anxiety throughout your pregnancy? If so, how did you cope with anxiety and not living in a constant state of fear throughout your pregnancy?

I'm still in the early stages, so YES. I'm oddly calm about the health of the baby. Part of me thinks we've already experienced every parent's worst nightmare, what else could happen? ...but then I also know how much can happen. I've lost the ability to be naive. So yes, there is fear, but I think more of the anxiety I feel is me wishing more than anything that I could have both of my children alive together.

What did you do practically to manage the day-to-day fear?

I remind myself that Riley would want us to be happy. She sent us many signs that made us feel like she'd want this for us. I know that when this baby comes, he or she will have the best guardian angel there is. If we lose this baby, I know they'll be with their big sister.

When we decided to start trying, I remember praying to God, "Please send us another baby, but please let us keep them this time." God knew what my heart needed for Riley's life, if it was going to be short, and I hope He knows what we need now.

We are creating a children's book called
"My Sister, Riley"…

What are some ways you honor and remember Riley with your new baby?

We aren't there fully yet, but we do have a couple of things in the works. If it's a girl, we plan to keep the nursery fairly similar and will even keep Riley's name up on the wall with her sister. If it's a boy, we'll change it more but still give Riley a section of the room like they're sharing.

We are creating a children's book called "My Sister, Riley" for when they're young, and a more robust book with all of our blog entries during Riley's life for when they're older.

We ordered a custom modified doll to look like Riley from another mama whose daughter has Trisomy 18. The baby doll will come with a nasal cannula, NG feeding tube, and will even have a little hemangioma on her knuckle, just like Riley did.