Parvana, a Trisomy 18 Angel

When we found out we were expecting Parvana, my husband, Paul, was finishing his degree at Auburn University. He accepted an offer for a job in Fort Worth, TX, and we planned to move after he graduated in May 2020. Parvana was due the first week of June, and we knew we would be arriving in Texas near her birth, but we figured we would have a few weeks to prepare for her. We were told she had some abnormalities at her anatomy scan and subsequent ultrasounds. Still, we declined further testing to receive an official diagnosis before birth.

  • May 15th — We had our final sonogram in Auburn, AL. We received the all-clear to move to Fort Worth and loaded up the U-Haul.
  • May 16th — We made the long 12-hour drive to Texas, stopping frequently for the very pregnant mama.
  • May 17th — Our incredible family worked all day to unpack and make our new apartment into a home.
  • May 18th — At 12 pm, we had an appointment with a new Maternal-Fetal Medicine specialist. At this appointment, the doctor mentioned she had markers for Trisomy 18 or 13. Up until that day, we had never heard of those genetic differences. We were also told to consider inducing delivery because the longer we waited, the less likely we would meet Parvana alive. We were admitted to the hospital at 7 pm to attempt an induction overnight.
  • May 19th — Our beautiful baby girl was born via emergency c-section at 3:49 pm after having repeated and prolonged decels during the attempted induction.

When Parvana was three days old, we received the official diagnosis that she did have full Trisomy 18, which came with a large ventricular septal defect in her heart, severe bronchomalacia, and underdeveloped portions of her brain.

After 38 days in the NICU at both Baylor Scott and White All Saints and then Cook Children's Medical Center, we finally got to come home! We give both hospitals a lot of credit for giving us our girl and helping us bring her home. She came home using an NG tube and an Airvo and was on hospice. We were told to expect her to "go any time."

During Parvana's time at home with us, we took advantage of every opportunity to be outside with her. We affectionately called her our "cyborg baby" because she was so battery-powered! She reminded us to go and live without fear and soak up every day we're given to enjoy God's creation. It was important to us to provide her with as many experiences as we could while we were able! Parvana got to go disc golfing, dunk her feet in the pool, worship with us at church, and even go to the Alliance Air Show!

Parvana lived for 5 months and 26 days. Her name means "butterfly" or "seeker of light" in Farsi, and she lived up to her name. God used her to teach us how to seek the Light in every circumstance. Parvana showed us Jesus every day of her life — from the way she wiggled and moved before she was born all the way through to her last day on this Earth when she wanted to be with her family before going home.

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