Our angel Stella Marie was diagnosed with Trisomy 18. This is the story of my heartbreaking journey as I fought against my own faith.
I always knew I wanted to get married, have a big family, be able to stay home with my children and then go back to work when they were in school. That was my dream. And although my life took many detours, last October I thought, boy my dreams are all coming true, I am so blessed. I was married to a wonderful man, I had three children ages fourteen, three and one, and I was staying home with my children while finishing my bachelor’s degree. We were excited having just found out I was pregnant with our fourth baby.
A week later morning sickness took over my life. I am normally very energetic and constantly doing projects with my kids, but this pregnancy was already kicking my butt. Some days I was too sick to get out of bed. I told my doctor that I thought something wasn’t right because I had never felt like this before. She assured me that because I was older now (34) and all pregnancies are different, everything was fine.
My sickness never got better. I was starting to feel depressed, and I have never felt like that. But we were still very excited and I just kept saying to myself that I had to try to enjoy this pregnancy since it would be my last.
The day after my 4-month sonogram, they called to tell us they’d found a cyst in our baby’s brain and that I needed a higher level sonogram. I asked what the cyst meant, my doctor was very vague.
Of course, as a worried mother, I did my research and learned that the cyst could be related to Trisomy 18. I tried not to panic and started to pray.
Two weeks later at the next sonogram, we found out our baby had only two umbilical cord vessels instead of the usual three. They thought they’d detected a heart defect but wanted us to see a cardiologist to verify that.
When we talked with a genetic counselor, Trisomy 18 came up right away. She explained all the options and what to expect next. We talked about an amniocentesis and the risks, deciding to put that off until after we saw the cardiologist. I had this feeling in my stomach and I just kept telling myself This isn’t happening, and our baby is fine!
We also found out that day that we were having a girl. That was bittersweet.
The research I did indicated that most diagnoses of trisomy 18 were in girls. I struggle whether to tell my daughter that she was having a sister. But I believe in God, and I was always taught that if we talk about a situation in a positive manner, we will get positive results. So I bought matching girl pajamas, gave them to my daughter and told her she was having a baby sister.
We had to wait another week to see the cardiologist. Over that week my husband and I researched more about Trisomy 18 and discussed what we would do if we got the diagnosis.
It’s crazy. You think you know what decision you’d make in a situation like this, but until you actually go through it, you don’t really know. I had always said that I respected anyone’s right to make the decision that they feel is best for themselves and their families when it comes to abortion, but I could never terminate a pregnancy myself.
The cardiologist told us our daughter had a heart defect, then he said that this was also another marker for Trisomy18. We called our genetics counselor and went and got the amniocenteses done right away. Then we went home.
I kept praying. Our entire family was praying. Three days later I got the worst news of my life.
My husband was at work and I was home alone with my three children when I got the call. I hid behind the kitchen island and I fell apart. No one could understand this pain unless they were going through it. I called my husband and told him to come home, then my sister-in-law came and took my children to her home.
My husband and talked for hours. We did more and more research, but we knew the outcome. Because I was so far along, I only had two days to make a decision terminate or carry to term. We considered what was best, first for our unborn daughter, then for our other children, then for us as a couple, and then for me. It was an awful conversation to have, but an important one.
In the end, I couldn’t imagine putting my daughter through years of surgeries and pain if she survived. Then I thought of my other children. All of my attention would go to my disabled daughter and my children would become her caretakers with me. Then there would be the pain they’d suffer when she died. I thought of my husband and I, how as a couple could we handle this and whether it would tear us apart. I thought about how I would handle carrying this pregnancy to term to then watching my daughter die. Her chances were slim, especially because of her heart condition and everything else that comes with Trisomy 18. And last I thought if she lived, we’d be on edge every day of her life, thinking is this her last day with us? I couldn’t imagine anyone living like that.
So, against my own religious beliefs and for the sake of our unborn daughter and our family, I had to make the worst decision of my life.
I was angry, heartbroken and every part of my body hurt. Through this crazy, heartbreaking journey I struggled between my faith and what would be best for my family. At the end a sacrificed my own beliefs for her because I didn’t think that bringing her into this world with her condition was right. I still have nightmares about that day.
The day at the hospital was just strange. I went through an emotional roller-coaster. I focused on school and just talking with my husband. I went online and got all my schoolwork done for two weeks. Then just sat there waiting for this to be over. At first, when they told me she could be born alive, I kept saying No, I want God to take her first. I couldn’t even think of holding her alive and her dying in my arms. But then I was wishing she was born alive, so I could tell her I loved her and that I was sorry. I kept asking the nurses to check for a heartbeat. And every time it was strong. I just kept getting angrier at God for not taking her, for making her, and me, suffer through this.
Then the time came, I had her, and she was already gone.
Until then my husband had cried a little but he had concentrated on comforting me. Then when he held her, that was when he really felt it. In 12 years, I had never seen my husband cry like that. It was unbearable.
I cried too, but I felt a little comfort holding her. The hospital allowed us to hold her as long as we wanted. We had a blanket that our priest had blessed for us. A chaplain came in and baptized her. It was a sad but magical day. I held my daughter all day, I kissed her, I sang to her, told her that I loved her and that I wanted her very badly. I said sorry many times. Then we gave her back.
When we headed home, I felt like part of my heart had been ripped out and left behind at the hospital. It was a pain that I can’t even begin to put into words.
Its been now three-and-a-half months since our Stella Marie became an angel. I must say that as angry as I was with God I have felt his comfort. And though I may never understand the reason my faith is what has kept me from falling completely apart. My children keep me busy. My other daughter who is now four is so smart. She tells me all the time not to worry, that Stella is with God and we will see her when we go to Heaven. Every night when we pray, she prays for her baby sister. It’s amazing how well this little girl has handled this situation. She has comforted me more than I could have imagined. And though I am still grieving and I have my days, like today, that my heart really aches, other days I keep my focus on the blessings that I have.
I had a necklace made with Stella’s name on an infinity charm with a cross, I wear it every day. When people ask me how many children I have, I say four. My way of grieving is acknowledging that I had a daughter who is now in heaven.
I hope my story helps anyone else going through this. I remember when I started this journey, all the blogs and websites I kept finding were people who decided to keep their baby who then later died. I wanted to find others like myself who had decided to terminate. It was hard but I found Ending a Wanted Pregnancy. And once in a while I come in and re-read the stories. It reassures me that I made the right decision. Today I was telling my husband that sometimes I struggle and think I made the wrong choice and as I was telling him that he was looking on Facebook and he stumble on a post and I wanted to share it with anyone who reads this. I think this letter was a message from my Stella. I hope that anyone who is struggling with a situation similar to ours finds some comfort. I think I will always have days
Today, I was telling my husband that sometimes I struggle and think I made the wrong choice. As I was telling him that, he stumbled on a Facebook post that felt to me like a message from my Stella.
A Letter from Heaven
“Hi, it’s me. I just wanted to drop you a line to let you know I’m okay. The strangest part about my passing is I don’t feel gone from you. I do hear you talk to me, and most of the time I’m just trying to get you to feel my presence. I also smile when you keep asking me for signs that you set up—I promise they will come when you least expect it.
I really do try. Please stop saying you can’t feel me. When I see you laugh, it vibrates through my being and I smile too. Feelings like guilt, anger, regret and immense sadness sometimes build a barrier between us.
Feelings like guilt, anger, regret and immense sadness sometimes build a barrier between us.
Everyone grieves differently, however, my hope is that the signs I send help take the edge off, even for a quick moment. I would love for you to try harder to let go of those heavy layers that put the weight of the world on your shoulders. I might actually be able to come to you more easily. Finding the balance between “feeling it to heal it” and being stuck in it is a fine line. I honor how you grieve.
No, you couldn’t have saved me. No, you shouldn’t have done more. Yes, you made the right decision. I realize now that this earthly experience is all about finding out way back to love. All the rest is just part of the tough journey we call, “life.”
Thank you for letting me be your teacher. Until we meet again, promise me that you will love with all your heart, forgive in ways you thought not possible, release anger that no longer serves you, and slide into home plate saying, “I did it! I lived for you. I honor your memory by finding joy again.
[Editor’s note: A Letter from Heaven was originally written by Maureen Hancock]
I want to believe it’s a message from my baby girl, but also a message to who ever reads it from who they have lost.