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

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Our Trisomy 18 Journey: The Planning

You never realize how strong you are until strong is the only choice you have. Bob Marley. The emotions a mother feels after her child dies due to Trisomy 18 or other fetal abnormalities.

This part of our journey was so very difficult. I cannot explain the the agony I felt in knowing our sweet boy was alone, in refrigeration, just waiting. Waiting for us to figure out what to do with him and how to honor his short but very important life.

It felt like my heart was being ripped out of my chest every time I thought about him laying there, alone and cold. Thanks to a loving and compassionate funeral home, I knew he was safe, but even so, it was agonizing. I wanted to hold him. I wanted to comfort him. I wanted to keep him warm. I wanted him to return to my arms, even if just for a moment, to tell him how much I loved him and how much I missed him already.

I laid in bed crying and remember physically reaching both arms out to the sky, begging God to hand him to me; to let me hold him just one more time.

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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