One soon-to-be mother’s greatest fear was realized when her unborn daughter was diagnosed with a genetic disease called trisomy 18, where there is a third copy, in full or in part, of chromosome 18.
Despite the term “incompatible with life” used to describe the condition, this mother’s love proved greater than what nature had in store. Far from being a tragedy, life after her daughter’s birth became a beautiful celebration, and a victory against all odds.
Alivia Kraft and her husband were over the moon when she became pregnant with what would be their second child. When an ultrasound revealed it was going to be a girl, Alivia was blissful.
“I had desired a daughter since I was a little girl,” Alivia wrote to Love What Matters blog site. “I already had a perfectly healthy little boy.”
Alivia went for a 3D ultrasound at 27 weeks and saw their baby girl for the first time in 3D. It was very exciting for them.
During the scan, though, the ultrasound technician appeared worried, and she kept checking the baby’s heart. “Jeanette, what’s wrong?” asked Alivia.
Jeanette replied, “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.”
Alivia reeled when she heard that. It was as though her worst nightmare was coming true.
Urgently, they returned the next day for a second ultrasound, and Alivia asked the specialist whether it really was, in fact, Down syndrome.
“Oh, you’ll be lucky if it’s that,” the specialist replied. “I’m thinking more along the lines of trisomy 18 or 13.”
“I can’t even describe the feeling I felt,” Alivia recalled. “It was just an indescribable emptiness surrounded by fear. And then anger. How could God allow me to think my baby girl was healthy and then take her away?”
During the months that followed, Alivia went through “waves” of emotion. “Denial, fear, anger, hope,” were what she recalled.
They decided to move two hours closer to the hospital to make it easier for their daughter to receive treatment after her birth. During those months, coping was difficult.
Alivia prayed for the health of her daughter, “God, just let me hear her cry,” she recalled thinking.
’On the night you were born,the moon smiled with such wonderthat the stars peeked in to see you and the night wind…
When the day of arrival finally came, Lillian Rose, their daughter, was delivered via cesarean section.
“At 12:58 a.m. on August 3, a baby girl was born silently into the world,” Alivia wrote. “I remember the room being so quiet that you could hear a pin needle drop. We were all waiting. And then, she cried!
“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.”
The term “incompatible with life” became inconsequential to Alivia when she held her daughter to her chest in the hospital, and long afterward when they had returned home. Clearly, Lillian is quite compatible with life.
It’s her long auburn hair. It’s her blue eyes. Her perfect little hands and her crooked pointer fingers that reach up and touch my face. It’s her button nose that scoops up on the end and has the most perfect curve to kiss. It’s the curls that fall at the end of her hair. Trisomy 18 to me is nighttime snuggles, telling her I love her a million times every day, making sure I give her a lifetime of kisses and showing the world how perfect she really is.
Now, Lillian has surpassed her life expectancy 10 times over. “Why was I so afraid,” wrote her mother.
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.
“Trisomy 18.” “Incompatible with life.” “Why would anyone want a baby like that?”I think back to the day that…