My husband and I were expecting our third child in 2019. Excited and thrilled was an understatement. With the two healthy (boy) pregnancies behind us, we didn't sweat the small stuff and life was busy. In order to have my husband at the ultrasound, we always had to have the appointment on Friday. Our 20th week fell on Thanksgiving which didn't work for us, and then every Friday in December wasn't an option either due to other holiday commitments and gatherings. My doctor and I laughed, saying "#ThirdChild", and we made plans to do our first initial 20-week ultrasound during my 27th week checkup in early January.
Throughout this pregnancy, I had been noticing minimal movement but just thought I was busy or my placenta was on the outside. All is fine, no worries. Around 25 weeks, I went to New Orleans for a bachelorette party. In preparation for the trip, I feared how swollen my feet would get from walking around or how the smells would bother me. In over planning and thinking about everything, I brought along a handful of essential oils and other remedies. During that trip, I felt nothing; literally and figuratively. I out danced all the ladies, never was bothered by all the smells of New Orleans, my feet never hurt, and I never felt the baby which made me feel very uneasy. I got home on Sunday night and expressed my concerns to my husband, which prompted us to call on Monday to make our "first" sonogram appointment at 25 weeks.
Tuesday morning, as the ultrasound started, we were immediately met with what looked like a bubble above the baby's head, which was a cyst on the umbilical cord. I immediately started crying, as it confirmed to me "something" was off. My husband comforted me, saying it's just a cyst and likely no big deal, but my mother's intuition pulled hard. The sonographer was confused as to why this was my first ultrasound so late in our pregnancy. I explained our busy schedules and she said, "Well, I have no one after you. How about you go to the bathroom and I'll let the doc know we will be a bit longer due to the cyst". Here I thought I won the extended ultrasound lottery! As we saw our little Duckie, all looked fine to us. When it came time to see the sex, we looked away like we had with the other two boys. Because this appointment was off my normal schedule, my typical doctor was not available to meet with us. The step-in doctor walked into the room, introduced herself with a smile, and then immediately sat down and asked about the movement. I said "Not good, that's why we are here". It was then, she dropped her head, took a deep breath, and said "I'm so sorry to tell you this. Your baby has a handful of abnormalities, from a misshapen skull, intestines formed outside the body, extreme spina bifida, heart developed on the wrong side of the body, rocker bottom feet syndrome, to obviously the cyst on the umbilical cord that you know about, and that's just what we can see." Not one area of this little body wasn't affected by something heartbreaking. The doctor explained that by themselves, an abnormality or two could be manageable. However, this baby had multiple extreme abnormalities. Along with being underweight and not getting proper nutrients, it's likely that this pregnancy would not make it much longer. I asked if they knew the sex, as I now wanted to know, I wanted to name this baby, pray for this baby...bond with this baby. Unfortunately, she said they were unable to determine the sex. The doctor then shared they already had a scheduled appointment with a specialist for a second opinion. It was then that it hit me how serious this was, this doctor walked into the room with my next appointment in hand. It was not one of those, 'here's the number, call when you get a chance'.
Two days later, we met with the Perinatologist. As his sonographer started the appointment, with tears already streaming, I asked if she could see what the sex was. I also asked for grace if it is a girl, as I've prayed for a girl to join our family and I'm fearful my dream was unraveling. She too could not determine the sex, as the legs were tucked and closed. As the doctor came in, he confirmed the Trisomy 18 diagnosis and as he was scanning and showing us the abnormalities, Baby Kruse decided it was time to share—Duckie was a girl. He told us that the likelihood of making it a few more weeks or to term was simply not in the cards, let alone leaving the hospital as the abnormalities were too severe and were not compatible with life. We were crushed. Trisomy 18 is rare (1 in 5,000) and here we are, the "not-so-lucky" 1. Trisomy 18 ultimately is an extra copy of the 18th chromosome, which affects the development of everything, making life incompatible. Out of love, and because we knew time was not on our daughter’s side, we made the toughest decision with hopes of having a few minutes with her.
On December 22, 2019, Josh and I walked into UnityPoint Health – St. Luke’s to meet our daughter. Unfortunately, time was not gifted. Elizabeth Amy didn’t survive delivery. Her abnormalities got the best of her. After seeing and understanding what the doctors saw, we knew that our decision, while it left us heartbroken and sad, was the right decision for her, our boys, and us. The nurses and staff cried alongside yet offered support and love.
We shared a mere eight hours with our baby girl. While the experience was heart wrenching, how different those precious hours would have been during the peak of COVID-19 as my due date was April 1st. For that, we feel very lucky, we were able to share our beautiful daughter with visitors, capture time, and memories with Elizabeth Amy.
Katie and Josh Kruse
IN HONOR AND CELEBRATION OF ELIZABETH AMY, DONATIONS CAN BE MADE HERE. ON BEHALF OF THE KRUSE FAMILY, THANK YOU FOR YOUR GIFT.
