Alivia Kraft was more than halfway through her pregnancy when a 3D ultrasound revealed her unborn daughter had Trisomy 18.
The news came as a shock to Kraft, who had every reason to believe her daughter was healthy after the many ultrasounds she had before showed no signs of a birth defect.
Kraft explained to Love What Matters:
At 27 weeks gestation, we went in for an elective 3D ultrasound. I was so excited to see Lillian’s chubby cheeks and her sweet face, after all, this was going to be the very first time we got to see her in 3D. All of her prior ultrasounds deemed her perfectly healthy, so we had no worries, right? I remember my biggest fear being that the last ultrasound would be wrong and that we would find out she was actually a boy. I had desired a daughter since I was a little girl. I already had a perfectly healthy little boy, despite being born at 33 weeks gestation, and now I was getting my little girl. What a perfect family!
But it was the way the ultrasound technician kept looking at her unborn daughter’s heart that made Kraft start to worry about what she could possibly be looking at.
The mom continued:
I knew something was wrong. Fear fell over me like a giant black drape. My brain started getting foggy and my heart was racing. “Jeanette, what’s wrong?” I said. “Well, I’m just seeing some things. I’m going to run a diagnostic and send it over to your midwife. I see some things with the baby’s heart and stomach. I’m concerned she may have Down Syndrome.”
Kraft became hysterical. She admitted that her biggest concern was the thought of potentially losing her baby girl.
However, as Kraft later came to know, her daughter didn’t have Down syndrome, or Trisomy 21, she had Trisomy 18.
She recalled the conversation she had with the specialist her midwife encouraged her to see:
We went to see the specialist, and after a very long ultrasound, she rattled off a bunch of things they found wrong with my baby girl. “So, you think she has Down Syndrome?” “Oh, you’ll be lucky if it’s that. I’m thinking more along the lines of Trisomy 18 or 13.”
The feelings Kraft felt at that moment were indescribable.
How could God allow me to think my baby girl was healthy and then take her away? How could He do that to me? It’s hard for me to even type that, let alone think back to when those emotions and thoughts were so raw and real.
“Trisomy 18. Incompatible with life. Why would anyone want a baby like that?”
I think back to the day those words shook my pregnant body to the core and crushed the deepest parts of my soul. I quickly went to Google searching for hope. Instead, I found none. I closed my web browser feeling worse than when I opened it. I didn’t understand how the baby so full of life within me could be THAT sick. I didn’t understand how she was so beautiful in her ultrasounds, yet the doctors would only tell me about how “scary” she would look.
Kraft described the months leading up to their baby girl’s birth as “hard.” Kraft and her husband found a hospital willing to treat Lillian after birth, but because it was nearly two hours away, they had to move homes in order to be closer to it.
Not to mention Kraft was not only dealing with a high-risk pregnancy but also her lively 2-year-old son.
All Kraft could do was pray:
“Please, let her be healthy.” “Even if she’s not healthy, let it just be a heart defect and not Trisomy 18.” “God, just let me hear her cry.” We did our best to survive those day.
Then came the delivery day. Kraft described the mood as peaceful despite how long and emotional the day was. The soon-to-be mom of two focused on being excited and happy to meet her baby girl, having full faith that once she was born, she would “do amazing things.”
On August 3, 2016, Lillian “was born silently into the world”:
I remember the room being so quiet that you could hear a pin needle drop. We were all waiting. And then, she cried! It was music to all of our ears! You know those movie scenes were [sic] life is almost paused, and then something happens and it just gets loud and busy again? That’s what happened that day. They swaddled my 4lb baby girl, and brought her to me. I was in awe of how beautiful she was. I remember just being totally amazed by her. Her weight on my chest melted all of the fear away and I knew she was going to live.
Lillian is now a “gorgeous toddler,” and Kraft says her view of Trisomy 18 has changed completely.
To Kraft, Trisomy 18 is her daughter’s long, auburn hair that curls at the ends. It’s her blue eyes, perfect little hands, and her crooked pointer fingers that reach up and touch her face. Trisomy 18 is Lillian’s button nose that scoops up on the end and “has the most perfect curve to kiss.”
To Kraft, Trisomy 18 is cuddles and “I love yous.” It’s perfection. And the proud mom wants other people to see the beauty in Trisomy 18, too:
Lillian is a sassy, strong warrior that has overcome more in 2 years than most people do in 90. She still has daily struggles, and health complications but we take life one day at a time and do our best to live it to the fullest. I spent the majority of Lillian’s first year in constant fear of her death. Around the time of her first birthday, I realized that we are all going to die. Lillian has surpassed her life expectancy 10-fold, why was I so afraid? Tragedy could strike at any moment for any of us. And in those moments, I chose to live. I chose life for Lillian, again. I chose life for my family. We still go out and have dinner or shop. It’s not every week, but it’s as often as possible. We make the most of our situation. We laugh through hospital admissions. We sing through the storm. And we love more fiercely than we ever have. All because of one extra chromosome.
The mom told Dearly:
“The advice I would give to other parents going through this would be to just be still, have hope, and live in the moment. There were so many times the doctors told us there was no hope. I can’t count the times they told us Lillian wouldn’t even make it to birth. She will be attending her NICU reunion this year—at 2 years of age. There is ALWAYS hope.”
Kraft added that some of her most memorable family moments since her daughter was born include her first two Christmases and her first two vacations. But her “all-time favorite memory” was just after her third child was born:
“We had a beautiful home birth, and all three of my babies were laying in my bed. It was just the most gorgeous sight, seeing my family whole! I will cherish that moment forever.”
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