Walking through Loss | Elle's story

As part of Pregnancy and Infant Loss Awareness Month in October, we will be sharing stories of loss from local families. Please know that if you have experienced loss, you are not alone. Please join us at our 3rd Annual Pregnancy & Infant Loss Awareness Family Walk on October 15th to find the support and community you need to walk through your grief. We will be donating all proceeds to local loss groups who provide year round support for area families. A big thank you to Michelle Beckley of Running Circles Photography for her beautiful contribution of this photo series.

This is Elle’s story.

On the way to our first ultrasound, my husband and I joked we needed to practice our “surprised” face for when the doctor told us it was twins. My morning sickness had been horrendous, and since twins run in both our families, we had joked about the possibility. 20 minutes later, we stared at each other in shock when we saw our identical twin girls on the screen.

I had a wonderful OBGYN who helped me navigate through a miscarriage a few months earlier. He set me up with an incredible MFM, and for the next several months I saw each of them once a month. Every single ultrasound showed two beautiful, healthy, and very loved babies. We named them Paola Frances and Lola Audrey.

At 22 weeks when I saw my MFM, I knew immediately something was wrong. The ultrasound tech, usually a very chatty and friendly woman, left very abruptly to get the doctor. Through blurry eyes I watched as she described Twin-to-Twin Transfusion Syndrome. It’s a complication that occurs in roughly 20% of identical twin pregnancies. There is no known cause. Basically, the blood vessels in my placenta were not working properly. One baby was acting as a blood donor, and the other as a recipient. The donor baby was shutting down all nonessential functions, and was shrink wrapped inside her sac, tucked beneath my ribs. Our recipient on the other hand started working overtime. Her heart pumped constantly to push through all the excess blood, and her kidneys produced far more amniotic fluid than she needed. At 22 weeks I was measuring close to a full term pregnancy because of the abundance of fluid in her sac. Without medical intervention, TTTS has nearly a 100% mortality rate for both babies. That appointment was on a Friday, and by Sunday my husband and I were on a plane to meet with Specialists at the Children’s Hospital of Philadelphia.

After a nine hour day at the hospital Monday, the doctors agreed my best course of action was to have surgery early Tuesday morning. In the course of four days, I had progressed from stage 1 to stage 3, which meant they saw trauma to our recipient baby’s heart. They went in through an incision in my side, and cauterized all the blood vessels in my placenta that connected the girls. They also drained a liter of fluid from the amniotic sac. At 23 weeks, on Wednesday, December 12, an ultrasound showed our Baby A, our recipient baby, our Paola Frances, did not have a heartbeat.

I stayed in Philadelphia for a week on bedrest. It’s the only time in my life I looked in the mirror and didn’t recognize myself. After seven days, my husband and I went back to CHoP to check on our survivor. We were told she was also having issues with her heart. In addition, there was a chance of a brain issue due to the high risk of the surgery, as well as the fact that her sister had died. When an identical twin dies, a rush of blood will come onto the other baby and often cause a stroke. Since the surgery separated all visible blood vessels, we were hoping this would not be the case. We were to come back to Philadelphia in two weeks for her to undergo an echocardiogram and MRI. We came home to a house that had two cribs, two car seats, a double stroller. For the next several days I didn’t sleep, barely ate, and cried more than in my entire life. We spent Christmas Day not knowing what to do with all the presents for our children. I braced myself to raise a severely disabled child. I braced myself to lose another baby.

On our second trip to Philadelphia, we discovered our survivor’s brain was completely normal, and the trauma to her heart had reversed itself. It was the most beautiful news I had ever heard. We decided we needed to change her name, because knowing her original name was part of a set proved to be far too painful. Our Lola Audrey became Gemma Lola.

I carried both my daughters for another 14 weeks. After being diagnosed with Intrauterine Growth Restriction at 34 weeks, I had a C-Section at 37. I chose not to see or hold Paola. I did not want to remember her like that. Because my daughters are identical, I get to see her everyday. This has proven to be incredibly bittersweet. I have horrible anxiety when my daughter is around mirrors. I cannot bear to see two of her. We take a yoga class twice a week in a studio with floor to ceiling mirrors on one wall, and I always casually position myself so as not to look in them. My Aunt is an incredible mosaic artist and made a mirror for my husband and I for our wedding. It’s the only mirror I can look into with her without feeling like my world is falling apart.

My daughter is growing into a wonderful little girl. She has the most amazing spirit about her. She and I will be connected forever in a way that no one else will because after her sister died, we reabsorbed part of her into our bodies. It’s comforting to know she lives on through us. On Mother’s Day, we went as a family to the beach where my husband and I were married, and scattered Paola’s ashes in the ocean. I like to think that she is everywhere now. Wherever the water goes, a small piece of her goes as well. In that way, she is always with all of us. A lot of days, I am okay. Some days, all I can do is cry. Milestone days are especially difficult. When my daughter laughs or babbles, all I want is for her sister to be able to answer her. A few days before I found out I was pregnant, I saw a double rainbow. One was bathed in light, and the other shone in shadow. I think of it often, the perfect representation of my babies. Perhaps it was a warning of what was about to come. Or perhaps it was there to remind me that even though Paola is gone, nothing will sever the love and bond of a twin.