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.  Continue reading


Our Trisomy 18 Journey: My Baby’s Funeral

“Here I am, Lord. Is it I, Lord?”

The sounds of children’s voices echoed through the cathedral at my daughters’ school as my husband, dressed in black, carried our son Gabriel towards the altar. My two daughters and I, along with our family members and all the small children in attendance, followed behind, carrying white roses to offer him near his casket. My mom took one of my grandmother’s tablecloth’s and placed it over top, as a pall. A Catholic priest sprinkles incense on our infant son at our baby's funeral following his death due to fetal abnormalities and a genetic disorder known as Trisomy 18.

I will always remember my baby boy being placed at the forefront of this beautiful cathedral, painted light blue, surrounded by roses, stained glass windows, and the smell of incense. My husband placed a baby blue Crucifix on top of his casket and a two-toned blue Rosary nearby.

And then it began–my baby’s funeral. My son’s official farewell.  Continue reading

Our Trisomy 18 Journey: The Amniocentesis

A doctor holds an amniocentesis needle with a message about dealing with the procedure after a unexpected anatomy ultrasound during pregnancyMy husband and I called up my parents, as we always do in a crisis, and asked if they could come spend the night and take our daughters to school in the morning so we could get to the 7:30 a.m. amniocentesis. Again, it was as if the doctors wanted us there when no one else was around. Pregnancy is supposed to be a happy time and the last thing they wanted was a weeping mother in their office, or at least that is how it seemed at the time.

My heart broke because that day happened to be the Mother’s Day celebration in my youngest daughter’s preschool classroom. The children had been working tirelessly to perfect their special songs, one in English and one in Spanish. There was no place on Earth I wanted to be, and yet, I was unable to tell the doctor’s “no.”  Continue reading

Our Trisomy 18 Journey: The Anatomy Ultrasound

He was tiny, but he was perfect in every way. A mother remembering her infant son who died shortly after childbirth due to Trisomy 18May 8th was perhaps the hardest day of my life.

After the phone call the night before, I asked my mom to come sit with me at the anatomy ultrasound. She was running behind because of traffic, and my heart was beating out of control. She made it, though. Thank goodness, she made it.

They called my name and we headed back. I told the tech about my phone call with Dr. Weed, and as I presumed, she had not been updated.

As the ultrasound proceeded, I was told there was a heart beat. He was alive. He was ALIVE! That, to me, was everything. I let my heart and mind ease a bit as she scanned his body on the screen. His little legs and feet were precious. Both of his hands had one finger pointing upwards, as if to say, “I’m number one!” Looking back, I wonder now if he was pointing up to heaven, letting me know he would be okay no matter what.

“Congratulations! You are having a boy,” the tech said. At that moment, I felt calm. Tears of joy flowed down my face because I knew that she wouldn’t have used those words if there was bad news. The blood work, as expected, was wrong. Continue reading

Our Trisomy 18 Journey: The Phone Call

A pregnant expecting mother looks at her cell phone in devastation after receiving hard news from her doctor regarding the health of the baby

It was around dinnertime and I was struggling to get food ready for the kids before the older one needed to head off to one of her activities. A typical evening in the life of a mom.

The phone rang and it showed a number from a far away area code; a number whose calls I had ignored earlier in the day, as I make a habit of not answering “unknowns” and prefer to wait for a message. For some reason, I made the decision to answer it, even in the midst of being so busy.

It was Dr. Weed, the maternal fetal medicine doctor who had performed one of my earlier ultrasounds, calling from her personal cell phone. That, in and of itself, should have been an indicator for what was to come.

Earlier in my pregnancy, like most expecting mothers, I had was sent to maternal fetal medicine for integrated screening to test my child for risks of genetic disorders. Dr. Weed was calling to give me the results of the second part of the blood work. I remembered when they had called me with the results of the first portion, and feeling scared when they left me a voicemail. No news is good news, right? So getting a phone call threw me off guard. When I called back, I was told that first set of blood work looked good and it corresponded well with the ultrasound, which showed what seemed to be a healthy, growing baby.

When I answered, Dr. Weed explained that she was calling to give me the second set of results. I told her that I had my 20-week ultrasound the very next day, and that I planned to pull my older daughter, who is nine, out of school so she could find out the gender with me. I wanted it to be a special day for the two of us.

She stopped me mid-conversation and warned me that the second portion of the blood work brought up some concerns. Continue reading