Our Trisomy 18 Journey: Empty Arms

Baby Gabriel’s footprint after passing away from genetic disorder called Trisomy 18.My dad and one of my sister’s came in and honestly, I think at that point, he was still alive.

Shortly after, I had each of my daughter’s come in to meet him, and essentially, to also say goodbye. I kept them separate so that they could each have a special moment with him, without any distraction.

My oldest was nine and it clearly broke her heart, but I think it also provided her with a lot of answers. She touched him and even smiled for a photo. Gabriel also “brought” her and her sister a special teddy bear, which we had him “hug” so that they would always have something tangible that they could hold. (Honestly, I find myself constantly holding their bears, too. It’s one of the last things I have that my baby boy physically touched.)

My younger daughter, who was five, came in after. I don’t think she grasped the idea that he had died, but that is probably for the best. All she knew is that she got to meet her brother and I think she will be eternally grateful for that as she gets older.

I had no intention of letting my four-year-old nephew come in the room, but the baby was so angelic that when his mom asked, it was completely fine by me. It was a honor to share Gabriel with as many family members as possible. I needed people to know just how “real” he was. That I had a son and that while he may have passed away, he was a very real part of our story. 

We had brought him a “micro” sized hat and blanket, but it was too big. A nurse offered us the most gorgeous knit blanket and a tiny hat, that fit him perfectly. Those gifts will be cherished for a lifetime. No matter how much you try to prepare, you just can’t. You cannot even begin to fathom this type of experience, let alone fully prepare for it. Bereavement photo of a mother with her child after induction of labor due to genetic abnormality and Trisomy 18

Awhile later, a young man came in the room and just stood there, almost in shock. I knew immediately he wasn’t a priest because of his clothes, his wedding ring, and his utter inability to speak. If I had to guess, I would assume this was his first time dealing with a situation like this and honestly think he became overwhelmed at what he saw.

At some point, he asked us what the “hardest part” of all of this has been, starting with me, then going to my mom, my daughter, and my husband. We tried to answer, but the truth was, we were right in the middle of it. He eventually pulled out a Bible and said some beautiful verses that I was grateful to hear, but honestly, I was also ready for him to leave. We needed our space.

My daughter said her final goodbyes and the next thing you knew, an older gentleman made his way in. If I wasn’t brokenhearted, I would have given him a huge smile and would have done a better job at expressing my gratitude. This man was a kindhearted volunteer photographer, who had heard about my Gabriel, and headed to the hospital to serve us in our time of need. He clearly knew what he was doing, but nonetheless, I could feel my son’s lifeless body getting cold and every minute that passed, my heart was falling apart. I just wanted to hold him tight.

He took photos of my sweet boy in my arms and in the hands of my husband. He made sure my mom was also included.

But then it got hard. He asked to take my tiny boy to the warming table to take some shots of his hands and feet. It was really hard. I knew that in the end, those photos would be something we’d cherish forever, but watching his body be manipulated by strangers was damn near impossible. At some point, my husband had to leave the room. He told me he was just “ready for Gabriel to rest.” It was a catch 22. We wanted the photos and will cherish them forever, but when time is limited, it feels like you are sharing time that isn’t yours to share.

The photographer left and mom said her final goodbyes to the grandson she would never get to know.

Finally, we were alone. Just the three of us. He was long gone, but that didn’t matter.

I held him. He held him. We held him together.

At one point, the nurse came in. We decided that it was time for him to have a bath. My husband wanted to be the one to clean him. Of all the emotions I’ve ever felt in my lifetime, watching him cry as he bathed our deceased child was one of the most significant moments I have ever experienced. I was hurting, but also admired my husband so much in that moment. He treated Gabriel with every ounce of dignity that he could.

There had been a shift change, but we were happy about that. We had experienced both the day and night shift nurses, and it seemed only fitting to share our experiences with both. They were the people helping us, compassionately, through the most difficult thing we’d ever faced. Erica offered to take Gabriel to have some molds of his hands and feet made.

We had to really think about it. The molds, we were told, would likely be cherished for a lifetime. Yet, Gabriel was cold at that point and I was having a hard time facing the changes that were happening to his body. I didn’t know what to do.

We decided to let her do it, though, because we didn’t want to regret not having them later on. We gave her a baby blue bereavement gown that we had purchased, just in case, and asked her to put it on him. She took about an hour and it was excruciating. In the end, I will always be grateful.

She brought my boy back to me, wrapped up like a little angel.  She laughed a little and said that, even after passing, he had decided to have a bowel movement while she was with him. It sounds silly, but it made me smile. I suppose it made me happy that his body got to function in some way. She took such great care of him while she was gone, but he was cold and limp nonetheless. It was time to say goodbye. It was time to let him sleep.

She left the room and this time, we had him by ourselves for a significant period of time. I rocked him like a mama rocks her baby goodnight. I sang to him, even if just for a minute. Handing him over was the single worst moment of my life. I kissed him and then kissed him again and again. As I felt him getting colder and limper, I built the courage to ask my husband to please take our baby from my arms because there was no possible way I could hand him over on my own. He was struggling just as much as I was, but he bravely took him from me and brought him out into the hall.

It was the last time I ever got to see him.

At that point, it was really late and they didn’t want to discharge me. I knew there was no possible way that I could sleep, so I asked the nurse for medication. She tried to get me sleeping pills but was denied. We settled for a few Benadryl with the hope I’d get even a few minutes of sleep. I didn’t have much success.

Early the next morning, the nurses came in to resume their testing. I was told I could get ready to discharge or I could wait until after traffic. I wanted to leave… and yet I also wanted to stay forever if it meant being near my boy.

As we walked down the hall, empty handed, I asked the nurse to show me where he was. She lead me to the room. I kissed my hand and placed it on door, saying goodbye to my sweet little Gabriel one last time.

Leaving was treacherous. Words cannot possibly begin to express the pain I felt. Everything I saw, every mile we drove was just another reminder of how I was leaving my baby behind, dead at a hospital, while I went home to try and move on. It was excruciating.

It is amazing how much you can miss someone that you ever had the opportunity to know.

What are your thoughts?

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