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

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Our Trisomy 18 Journey: Hello and Goodbye

Bereavement photo of a mother with her child after induction of labor due to genetic abnormality and Trisomy 18

The amount of emotion we felt on this day is indescribable. No parent, no person, should ever have to both welcome their child into this world and then have to hold them as they die.

You are so overwhelmed with joy and with heartache that there really is nothing else in life that is comparable. Until you’ve been there, there is no possible way you can understand.

While it is my greatest hope that no one else ever has to experience this same sort of pain, I know now that it happens every day. Whether it be from Trisomy 13 or Trisomy 18, or from any other form of fetal demise, it will happen. Since I cannot do anything to prevent it, I at least want to share my story so that other women can go into these circumstances knowing they are not alone. Besides my faith in God, the only humanly thing that has consoled me has been hearing the stories of other women who have lived through the death of their baby and have somehow, someway, survived it.  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