Trisomy 18: Our angel baby

I’ve been silent for a little while now. I owe you all an explanation of where I’ve been. I’ve been taking pictures more frequently again but am still trying to get back to a more normal routine. I’ve never been in a place like this before. It’s been life altering for our little family.

It all started on Christmas eve 2013. We took our two little boys in to my doctor’s appointment to find out if we were having a boy or a girl. My little guy thought it was a girl. Our oldest thought it was a boy. I bought two little sets of jammies for our boys to open that night with their Christmas jammies in front of our family for the “big reveal” of the gender of our baby.  One if it was a girl and one if it was a boy. But our “reveal” never happened. The whole world crumbled beneath us instead. We went to see the doctor after our ultrasound and we were still reeling over yet another boy. 🙂 Then he dropped the bomb on us. He told us that our baby’s insides were growing on the outside of his little belly and that his hands were kinked downward. When he said he had the omphalocele I thought that we were going to be in the NICU with him for a very long time, but I thought that it was probably just an issue when the cells were dividing and that once he had surgery he would live a normal and happy life. Then the doctor said that his hands were bent over as well. This is when it hit me that there was more than one thing affected and that our little man might have some special needs. The doctor mentioned trisomy 18 in passing to me then referred me to a perinatologist. The perinatologist couldn’t see me obviously until the day after Christmas so I spent all of Christmas asking Dr. Google what Trisomy 18 was. This was probably the hardest Christmas we’ve ever had. There were so many symptoms on there that our little man had, and this is when I learned also that this genetic disorder is a fatal one. We learned that if he did indeed have Trisomy 18 that he would not be able to stay with us. He would be going back to heaven very soon. To say this was heartbreaking would be an understatement. We had had three previous miscarriages right in a row before this little man and we wanted him, desperately. The feeling that went along with this news was more like earth shattering, dark, black, a physical crushing of my chest, a sadness of the deepest kind that hurt so badly it was physically painful. I would wake up to this nightmare that was our life. This wasn’t how it was supposed to be. I had a plan, and God had already delayed my plan by two and a half years so this was supposed to be my miracle baby. This is more of my perspective as a mother. My husband felt and dealt with it differently. He was so strong for me. But from my perspective I was in denial. We went to the perinatologist and she confirmed our worst fears. She said that she was 95% sure that he had trisomy 18 and while we were there she also found a heart defect which is a classic symptom as well. I didn’t want to believe it. I kept asking her what his life would be like. How is quality of life would be. That’s when she turned to me and said that his condition was fatal and that he wouldn’t have a quality of life because IF he made it to birth he would die shortly thereafter. But she said she didn’t think he would make it to birth because he was so severe. But I needed more. I needed to know for sure. 95% wasn’t good enough. So I had her draw my blood to test for his DNA to find the trisomy 18 if it was present. So she did. Then we waited the very long ten days until the lab results came back, but the entire time I knew they were going to come back positive. Then I would get angry with myself that I didn’t have faith my son could be healed. Now looking back I realize that our Heavenly Father didn’t give him this genetic disorder by accident. It just wasn’t in our Creators plan to heal him. It was his plan that our little  man was to go right back home.

There has been so much water under the bridge since then. The results came back positive, and that week I actually started having contractions in what was originally a great and painless pregnancy. It could have been the stress. It could have been that my body was sensing his failure to thrive. But we have had so many spiritual experiences through out our time with our little lovey. One of them was his name. It popped into my head that his name should be Gabriel Rowen. We have no family with these names. They’ve never been on our radar. But it was him. After we found out that we were going to lose him. I was in the Timpanogos Temple thinking about the rough journey ahead and thinking about my little baby inside me and I felt him kick for the first time. It felt like he was saying so clearly “Mom, I’m here. This is what I was meant for. I needed my body and now I have it.”

Shortly after that I went into labor. I delivered our angel Gabriel Rowen on January 9, 2014 at 7:41pm. He was born with wings. We were never able to see him alive on this earth. But we felt him there. It was probably one of the most spiritual and special moments I’ve ever had in my life. It was so incredibly bittersweet. This is not what we had ever wanted, but we realized he was never meant for here. He had work to do elsewhere. He had already proven himself and didn’t have to be tested and tried in this life. We were able to hold him for as long as we wanted. He was so small. His little feet and his face were perfect. He looked like my husband. He had his mouth and his nose.

The aftermath: This has been probably the hardest part just because it is ongoing and isn’t something that I can finish. It’s a lifelong every day kind of pain that doesn’t go away. I’m told it lessens, and it has. In the three months since I’ve had Gabriel every day is a little better. Instead of feeling like I’m constantly drowning and can’t breath it comes in waves now. Crashing waves actually. The kind that knock you over and take your breath away. But I have the in between now. The moments of brightness where the water above me thins and I can see the sun. The in betweens come mostly in the form of my family. Especially my husband and two little boys. I feel like “the littles” around us are closer to heaven. They aren’t as blocked as the rest of us. My boys pray for their brother almost every single night, they talk about him often. They talk about what his favorite shows would be, how he would like a certain color toothbrush and what color power ranger would be his favorite. Our five year old is convinced he lives in heaven with Zeus and when we prove ourselves to be heroes like Hercules that we will be able to go live with him too. Not so far off the mark buddy. So here’s to “living like heroes” so we can be with our little man again someday. In the meantime I’m trying to surrender my will to my Heavenly Father. “Not my will, but thine be done.” has taken on a whole new meaning in the Hansen household. Growing isn’t comfortable. It hurts, sometimes it can more than hurt, it can be agonizing and unbearable. But when we are able to surrender our will to the Father and willing to face our trials with courage and steadfastness knowing that all our trials will be for our good to give us growth and understanding and help us become the person that we were meant to be, then we will succeed. We will come off conquerer. I’m grateful for our angel baby and what he has taught us. Someday I will have understanding. Whether in this life or the next. Right now I’m just working on having peace. Every day is a little better and I know with continued effort on my part it will continue to come. Our Heavenly Father is in the details of our lives. He is aware of us.


I have some photos that chronicle our Journey. I also have a video on my personal Facebook page that is public. When I found out about our little boy I wanted to find others who knew what we were going through. So now I’m adding to that awareness of trisomy 18. It’s that club that no one wants to be a part of but once you’re in it you’re glad you aren’t alone because it can feel so isolating. But if you are going through this just know you aren’t alone. There is a reason why. Maybe not one that we will know of any time soon but there are so many blessings on this journey of giving a baby back to Heavenly Father. I hope you find the peace.


The photos at the hospital were done by Now I lay me down to sleep (volunteer professional photographer) Tracy Anderson. She was amazing and so incredible. I have her photos hanging on my wall in my house now. The photos at the funeral were done by my cousin who is also amazing. Kelsie Farmer of Kelsie Rae Photography. I appreciate these gals so much, as I know this would be an extremely hard thing to photograph. I also have a little video I put together HERE on my Facebook page. 

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