Dear Fellow Loss Parent,
I am so sorry for what you are going through, and I want you to know you are not alone. Let me start by sharing a little bit of our story.
Back in 2019, we had two beautiful, healthy boys. Only 21 months apart, we were busy and loving every moment with them. Both of us coming from bigger families, we of course wanted another more child. We were lucky enough to get pregnant right away and were gearing up for three babies back-to-back-to-back.
And then our world was turned upside-down.
I went to our 12 week NT scan, alone, because this was our third baby and we had two healthy babies, no reason to worry. Admittedly, the primary reason for doing this scan was to find out the gender. As the ultrasound tech was looking at the baby, she said the baby was actually 13 weeks, which didn't surprise me because I had thought I was a little further along than they predicted. Then I noticed her focusing on one spot over and over. I just figured she was getting pictures, I even made a comment “I see 10 toes”, to which she awkwardly laughed. My heart dropped, I knew something was wrong.
An hour later I was sitting in the doctors office as she explained to me that the baby was missing leg bones. Multiple leg bones, and in both legs. She had a conference call with another doctor right then and there, and they both agreed after looking at the scans that 100% bones, likely different bones, from each leg were missing. On my way home, I called my husband–sobbing. In true Ryan fashion, he assured me everything would be ok and we would figure this out together.
That night, all we did was research the condition the doctor wrote down. And we were hopeful. We knew if it was this condition, it would be amputation of both legs at 1 and a life of prosthetics. We talked about how that could be a blessing in so many ways; the resilience our child would gain, how we would never let that hold them back and they would be better off for it. We talked about the impact this would have on our two boys; both the challenges and how this would help shape them into caring, compassionate people. We had hope.
In the next few days, after my doctor had spoken with the team of specialists at CHOP, she explained the distinguishing features from the scans that indicated it is likely not the condition initially thought. After a grueling conversation, we ended up on not knowing what it could be until further testing, and that it was a 66% chance whatever condition this was would likely affect the brain, heart, and/or skeletal system–all of which could be life-threatning. Testing would take weeks, had risks, and would only yield answers if doctors tested for the right panel of diagnoses. We went from hope to living a normal life to fear that we would have to bury our child, our sons’ brother or sister. We were left with the hardest decision of our lives.
In November 2019, for medical reasons, we terminated our pregnancy at 14 weeks.
Two weeks later, all testing came back negative. It was a boy. We will never know what he had, but we do know it was an extremely rare, spontaneous mutation.
There is nothing to describe the pain that comes with terminating a wanted pregnancy. This type of loss is not typical. It is not talked about. All we can say is until you are in the situation, you don’t know what decision you would make. I wish nothing more everyday that we did not have a choice to make. I will question this choice everyday for the rest of my life.
In the months to follow, we grieved our loss. We told our three year old at the time that the baby in mommy’s belly died. He still, at 7, asks how and why. I don’t know how to answer him. We struggled with the thought of expanding our family. The thought of something going wrong again was unbearable, but as the years went on we felt in our souls that our family was not complete. In 2021, we had two miscarriages.
Right when we were ready to stop trying, our boys kept asking for a baby. They had no idea we had been trying. We decided to give it one last try and we were blessed with our baby girl.
On September 24, 2022 I birthed a healthy baby girl, perfect in every way. I am more thankful for her than I can put into words. For years, I asked myself why. Why did we have to go through this, make such a hard decision, why us? I can’t help but reflect on how different my life is. Instead of three boys back-to-back-to-back, I have two boys and a daughter. There is a four year gap. Our boys are enjoying every moment, every milestone, right along with us. Watching them be big brothers is truly the best gift.
I wonder every single day “what-if”. But now I know without him, there wouldn't have been her.
I know how hard infant loss is. I also know, after going through three losses, how many people are struggling similar battles. There was a different type of grief with each type of loss I endured. There is a community of hope and support out there, my advice is to go find it. I found solace in talking to others and being open about my story. I received so much support in doing so.
My biggest take-a-way from all of this is how grateful I am for things I used to take for granted. If you are in a place of questioning why, fearful of trying again for another child—I encourage you to keep going. It may not make sense, and you may not get all of the answers you hope for, but you can find peace.
My hope for you is despite this season of hardship, you find your peace and your why. You will know when you do.
All my love,
Jamie