Very few things matter more to an expectant mother than the health of her baby. Tracy Beene's story of motherhood and her mission brings purpose and hope in the face of tragedy. KTHV
The Beene Family
Very few things matter more to an expectant mother than the health of her baby. Tracy Beene’s story of motherhood and her mission brings purpose and hope in the face of tragedy.
"As strange as it sounds, I love it because this is all I have,” Tracy said. “It’s not gonna be easy, it’s not gonna be fun, but we're gonna make it through it.”
Tracy and her husband JD have four children together and are expecting another. The little girl’s name is Nora Kate. Tracy said they got pregnant with Nora quickly and found out about the pregnancy earlier in the summer.
"We were very excited, so excited," she said.
Of course, all the typical preparations began to welcome a new baby girl into the world. But Nora Kate Beene's story is nowhere near typical.
"I keep feeling her move. And that seems very normal. But nothing about this is normal because we know what's going to happen in the end," said Tracy. "She will just look like a little girl when she comes out and you won't see what all is going on inside of her."
All seemed well with Nora Kate until Tracy got a call from her doctor. The doctor said they found something.
“And I actually giggled because I was like ‘here we go.’ We were ready. I wasn't upset, I thought, we're gonna be okay," she told us. "We had discussed the possibilities of what could happen with my age. And we were ready for it."
Tracy is 43-years-old. She and her husband knew they were taking a risk when they got pregnant with their fifth child, but they weren’t ready for what came next. The doctor told them that little Nora Kate, this beautiful new addition to their family had Trisomy 18.
"I'd never heard of it. I'd never heard of it. And so, while she’s trying to explain to me what this is, I'm trying to google and talk at the same time to her and nothing I'm seeing is good. Absolutely nothing. And she just keeps telling me she's sorry. And that it was just a rare event," she explained.
What is Trisomy 18?
Trisomy 18 is an error in cell division that occurs in about 1 out of every 2,500 pregnancies and 1 in 6,000 live births. Amniocentisis, which is a prenatal test that determines if your baby has abnormalities or genetic disorders, confirmed little Nora Kate has full Trisomy 18.
"Unfortunately, with full Trisomy 18, that full set of chromosomes is in every cell of her body," said Tracy. With Trisomy 18, most of the babies start to pass during the third trimester.
“If they do survive the birth, which is traumatic in itself, you could have moments, you can have minutes, you can have hours," she added.
Tracy told us with a heavy heart, “Unfortunately our Nora is going to die."
Right now, Nora Kate is alive and kicking in her mother’s womb. Thanksgiving Day marks 30 weeks and Tracy has come to accept that this pregnancy is her life with Nora Kate.
“Every pound, every bit of roundness that I am at the moment, is my lifetime with her. And I know that. I don't have the first day of kindergarten, but I do have where she is jabbing me to death,” she said laughingly. “And that’s our connection. And I love it."
Nora Kate Designs
She has also grown to love creating wooden signs. It is something crafty and simple that Tracy started a few months ago to get her mind off the impending loss of Nora Kate.
"That made me move forward. That made me talk about it. And I realized being able to talk about her actually felt better," she said.
People began buying Tracy's signs. The more she talked and the more she created, the more she began to see a purpose. The purpose was seeing that Tracy was not alone and that others have walked a similar path and that's when Nora Kate Designs was born.
"It gives us an option to talk about Nora Kate. Who's Nora Kate? Well let me tell you Nora Kate’s story," she said. “This is a way for me, maybe it's selfish, but this is a way for Nora to always be part of our family. I will always have something tangible for my Nora. And in the meantime, if we get to help a few families who are going through this, then that's her life mission. That was her purpose."
Keep Moving Forward
This mother is speaking in the past tense about a baby she has yet to deliver. It’s the hard part of losing Nora Kate will likely come in January. It’s a day Tracy said will be tragic but also be a day to celebrate.
"We still have the hard part to go. And I know that. It’s gonna be awful," she said. "I'm hoping to get my brain in a place that’s just a little more ready to say goodbye when its time. But she'll always be part of us. And her name will always be part of us."
Tracy said her family knows the outcome and it’s the worst possible outcome. But it’s the only birthday she’ll have with Nora Kate, so she’s doing her best to keep a positive thought in the room.
"[We] celebrate what she has taught us, celebrate who we will be because of the whole situation. and just remember she’s going to be a part of our family in one capacity or another along the way," she added.
Tracy and her family have a motto, “Keep moving forward.” And that is exactly what her family will do.
Full RAW interview below:
Tracy Beene shares her story of triumph over heartbreak. She is pregnant with her 5th child, Nora Kate, but Nora Kate has Trisomy 18. KTHV