The medical student’s voice rang clear and calloused over the phone: The test results showed Katie Malone’s daughter had Trisomy 13, a complicated — and often fatal — condition.
Trisomy 13 is when the 13th chromosome has three copies instead of the usual two. It causes an array of problems from cleft palates to congenital heart defects.
The recommendation was TFMR, termination for medical reasons, the student said, and at 20 weeks, the deadline for that procedure was coming up fast for the state of Alabama. The student rattled off a few other states where Katie and her husband, Jacob, could go to abort the pregnancy later on.
Life: The Only Option
Distraight, Katie burst into tears. She knew the struggle was just beginning, but one thing was for certain: Abortion was not an option.
“We do not believe in abortion,” Katie said. “We are pro-life. They just really gave us no hope and so it was pretty much like a death sentence. … We didn’t really know how to move forward because we weren’t going to abort and I could still feel her kicking and moving inside of me so she was very much alive, but they were telling us she was going to die directly after birth when they haven’t even met her or seen any of her medical conditions.”
The pregnancy was stressful on Katie and Jacob. They didn’t know how to act, what to do, how to prepare.
“Then we understood that God may be using this as a way to get Him some glory,” Katie said. “Everything has a purpose and He fearfully and wonderfully made (our daughter). Once we got that mindset, it was a lot better. That was the verse we held onto.”
Katie brings up this idea of being “fearfully and wonderfully made” a lot. It comes from the Bible; it’s Psalm 139:14, which reads, “I praise you because I am fearfully and wonderfully made; your works are wonderful.” It’s even hanging on a sign in their nursery to remind them every day that she was made exactly how God wanted her to be made.
Only about 1 in 16,000 babies are born with Trisomy 13, and advanced maternal age raises the stakes. Katie, in her 20s, was far from a geriatric pregnancy, someone over the age of 35, so the odds of having a child with Trisomy 13 were even lower.
It was the cleft palate seen on ultrasound that prompted more testing, and genetic screening showed the Trisomy 13 diagnosis. Doctors immediately said Katie and Jacob the diagnosis was lethal, their daughter wouldn’t live through birth and even if she did, there was only about a 10 percent chance of surviving through her first birthday.
After the diagnosis, Katie and Jacob took to the internet where they found other kids living with Trisomy 13. This was the first time when they thought maybe, just maybe, there was a chance for Nora to live.
The moment of truth came at Katie’s 37th week. At a routine checkup, doctors found preeclampsia, high blood pressure and immediately sent her to delivery.
“It was very scary because we knew we may not get to meet her,” Katie said.
She was at the University of Alabama in Birmingham, a learning hospital, so the delivery room was full of doctors, teachers, residents and students — all waiting to take her to the NICU immediately after birth.
“They were very understanding … but they were very sure to tell us … she’s probably not going to make it,” Katie said.
After giving birth, Katie didn’t hear Nora cry for a few seconds — which, to a mom, feels like a lifetime — making her heart fall at the thought of a stillbirth. Finally, Nora let out a tiny squeak to let everyone know she was alive and ready to fight.
“We all rejoiced when we heard her cry because we knew we’d at least get to meet her for a little while,” Katie said.
If Nora was braindead or on a ventilator, Katie and Jacob were prepared to make end-of-life decisions, but it never came to that. A few weeks after she was born, Katie and Jacob got to take Nora home to the nursery they’d prepared for her.
“She was a feisty little thing,” Katie said. “I think just seeing her wanting to be here made us want to fight harder.”
Trisomy 13 alone isn’t the problem; it’s the conditions that come along with that extra chromosome. If you treat the conditions — in Nora’s case a hole in her heart and a cleft lip and palate — the better the chances of having a happy life.
“She had a cleft lip and a cleft palate,” Katie said. “She had a large hole in her heart. She has six fingers on each hand, so 12 fingers.”
Nora had heart surgery at three months to repair her heart and another surgery later on to fix her lip.
Learning From Nora Rose
There’s no pretty bow to wrap up this hard diagnosis. Once they got Nora home, they took shifts watching Nora as she slept. They had a hospital-grade pulse oximeter, but it was so loud it woke the neighbors up when it went off.
“I think after I did everything right in my pregnancy and something still happened to her, I think it helped me give up control, knowing that I couldn’t have control of everything, it kind of gave us some peace with her,” Katie said. “We realized God is in control.”
That realization was what Jacob and Katie needed to sleep, so they started putting Nora down for the night and going to bed.
Days were rough, too. It took two people — usually Katie’s mom and Jacob’s grandmother because no one else was brave enough to stay with her — to take care of Nora during the day while Katie and Jacob went to work.
But through it all, Nora taught them some hard lessons about life, love and who God makes.
“If God puts someone on the Earth, it’s for a reason,” Katie said. “They have a purpose even if we can’t see it. We definitely didn’t know what Nora’s purpose would be, but now it’s very apparent that it’s trying to open peoples’ eyes to how God’s … strength can be known in her weaknesses. … He used a little girl that they thought shouldn’t live.”
This October Nora will turn 4. She’s a redhead. She’s feisty — probably because of that red hair — and she keeps everyone on their toes. She likes to wrestle and rough house and watch Netflix, just like any other toddler. The Facebook page detailing her journey is full of photos of her dressed in smocked outfits, big hair bows and pink — just like any southern little girl. She’s wild and funny, spunky and sassy. She’s so precious you can’t decide if you want to hug her or take her shopping and buy all the toys.
Most importantly, Nora is fearfully and wonderfully made.