“Incompatible with life.”
“Why would anyone want a baby like that?”
These are the heartbreaking words Alivia Kraft recalls hearing in the background as she struggled to comprehend what the doctor had just told her.
She had gone in for an elective 3D ultrasound at 27 weeks, excited to see her unborn daughter’s chubby cheeks and precious face, when she was instead met with the grim news that her baby – the little girl she had desired since she was a little girl – had a serious birth defect.
“I didn’t understand how the baby so full of life within me could be THAT sick,” Alivia said. “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.”
Alivia struggled to come to terms with the fact that her daughter, whom she had named Lillian, wouldn’t be the healthy baby she had hoped for. In fact, she might not even live long enough to take her first breath.
“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? How could He do that to me?”
Alivia and her husband found a hospital that was willing to treat Lillian after she was born and moved two hours from their home with their 2-year-old son to be closer to the hospital.
As they prepared for Lillian’s arrival, they went through waves of emotions: denial, fear, anger, hope.
Through it all, Alivia knew all she could do was pray.
“It was hard. Life was so hard in those moments,” she remembered. “My prayers changed as we went through the motions. ‘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.’”
Finally, Alivia went into labor. As her body contracted, she tried to be happy and hopeful about meeting her baby girl. She had faith that Lillian would be born alive and go on to “do amazing things.”
“At 12:58 a.m. on August 3, a baby girl was born silently into the world,” Alivia wrote. “She was rushed over to a stabilization area and bagged. 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 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.”
All of the fear and anxiety Alivia had struggled with over the past few months immediately melted away when she held her beautiful daughter in her arms. Lillian looked up at her with two beautiful blue eyes and quietly nuzzled into her mom’s chest.
While she was pregnant, Trisomy 18 was like a monster lurking in the shadows. Now, Alivia saw it in a whole new light.
“When I was pregnant with her, my view of Trisomy 18 was so different than it is now,” she said.
“Now, my view of Trisomy 18 is this gorgeous TODDLER. 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 night time 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.”
Today, Lillian is a “sassy, strong warrior” who has defied the scary statistics that doctors so coldly rattled off to Alivia and her husband. Alivia says Lillian has “overcome more in 2 years than most people do in 90,” but she is teaching her family – as well as complete strangers – about the beauty and fragility of life.
“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,” Alivia said. “I spent the majority of Lillian’s first year in constant fear of her death. Around the time of her first birthday, I realized 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.”
Alivia hopes that by sharing her family’s story, others will have a new view of Trisomy 18 and value Lillian – and others like her – for who they are, not what their medical charts might read.
“When people think of Trisomy 18, I want them to think of this picture,” Alivia said. “I want them to think of Lillian. I want them to see how beautiful Trisomy 18 is. I want them to look past that label and see children like my daughter for who they really are—perfect.”
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