Latter-day Saint Life

How an LDS Woman with Cystic Fibrosis Is Sacrificing Everything to Start a Family


Six months ago, becoming pregnant wasn't even a possibility in Mindy Catmull's mind. It just wasn't possible, not with her condition...or was it?

About 10 years ago, Mindy, then Mindy Shaw, thought Luke Catmull would always be the cute, older boy in her neighborhood who wouldn’t really notice her. Yet, when Luke returned from serving a mission, Mindy, then 18 years old, sent a message to him on Facebook asking if he wanted to hang out.

Their relationship grew from hanging out to dates until eventually Luke asked Mindy to be sealed for eternity with him. While they were still engaged, Mindy’s father pulled Luke aside and asked the typical things a future father-in-law might ask, except for one thing: What was Luke’s plan for health insurance?

The question wasn’t odd to Luke. In fact, he was expecting it, because, on their third date, Mindy had told Luke she had a genetic, terminal illness.

Since early childhood, Mindy knew she had cystic fibrosis (CF). A disease where thick mucus builds in the lung, pancreas, and other organs, those with CF have an increased chance of infection and damage to internal organs. Because of the damage caused to the lungs and other organs of the body, the current life expectancy of those with CF is the late 40s. It is also difficult for women with CF to conceive because of mucus lining the cervix. 

"In my patriarchal blessing, it didn't say anything about being a mom," Mindy said. "So I was always afraid I wasn't going to be one, even when I was little." 

But as Mindy began her family with Luke, she became determined to have children of her own despite her illness.

Adoption as an Option

Last summer Mindy and Luke decided to participate in a 24-hour fast.

"Mindy and I just felt the timing was right to start a family,” Luke said. But the couple wasn't sure how that was going to work out. 

They had been trying for several months to have a baby and praying that they could start their own family someday.

After the fast Luke asked Mindy if they should look into adoption. From there, Mindy and Luke moved quickly through the process, even starting a GoFundMe page to raise the $20,000-$50,000 it would cost to adopt a child.

They passed home studies, including intense interviews and home inspections. They handed in piles of paperwork. They came close. They even met a baby girl up for adoption, but it wasn’t meant to be.

“We were really pumped,” Luke said. "But it didn't work out. We weren't too devasted, but we were affected by it."

But there was something in the works for Luke and Mindy—a miracle they weren't expecting. 

“The Test Must be Wrong”

Last October, Orkambi, a drug to help treat cystic fibrosis, was released on the market. The drug was designed for only those of certain genotypes, the particular set of genes an individual has. Mindy’s genotype was a match for the treatment.

During this time, Mindy's father switched health insurances. While it seemed at first that the new health insurance company would not cover Orkambi, it turned out the switch was just what Mindy needed in order to receive this revolutionary medicine. 

Not long after Mindy began taking the medication, her lung function significantly improved. She was healthier than she had ever been before.

Then, in January, Mindy found out she was pregnant.

“It didn't feel like it was real,” Luke said. "It felt like, 'The test must be wrong, but I'm excited at the same time, but the test must be wrong, but I'm excited.'"

But amidst the excitement there was still the question: could the baby have CF?

While Mindy had the gene for CF, it was unclear whether or not Luke was a carrier. Due to the nature of CF, both parents must be carriers or have CF in order for the baby to be born with the disease. 

“I’ve heard of people who abort their kids as soon as they find out they have cystic fibrosis," Mindy said. "Or I’ve heard when they find out they are a carrier for CF, they stop having kids. I think that the Church plays a huge role in us knowing that God has a plan for everyone that He sends down here, so if they have cystic fibrosis, then that’s kind of God’s plan for them and that’s something that they need to go through in this life to make them who they are. It’s certainly made me who I am, all the trials and tribulations.”

Thankfully, after testing, it was found Luke was not a carrier, making it impossible for the Catmull’s baby to be born with CF.

However, now there were other things to worry about.

Challenges of pregnancy.

“In my mind, I immediately started going through the worst-case scenarios,” Luke said.

Lung infections, low-weight, gestational diabetes, and a myriad of other complications could strike Mindy.

"Generally, people with CF struggle a lot more," Mindy said. "My doctor actually tells young women with CF not to get pregnant because of all of the risks that happen."

But after 23 weeks, Mindy says she is healthier than ever.

Many of the medications Mindy was taking before she can still take during pregnancy. She even runs every day to help with her lung function.

"Mindy's not a wuss," Luke said. "She'll take stuff on. I think most people in her situation would be like, 'I can't move a muscle,' . . . but she's out running errands like, 'Are you even pregnant?'"

The two still have a while to go. Their baby, a boy, is due in September. But what comes after is still uncertain.

Looking Forward

Adoption is still a future option for the couple. The money raised for it is still untouched and waiting for them, should they decide to try adoption again.                          

More biological children could be an option as well. But any child would be a "blessing from our Heavenly Father," the Catmulls say. 

There is also the fact that Mindy, now 22, is about half-way through the projected life expectancy of someone with CF. While a cure could surface in the future, there is still the grim chance that Mindy could die before most mothers do.

The two remain optimistic, though, as they look at the future through a lens of faith.

“We know what the most important thing is, and that is family,” Mindy said. “And the whole goal is to make it back to Heavenly Father and become eternal families and be sealed with our families forever. I think it’s awesome that we have that knowledge because other people don’t have the opportunity to know that. I think people decide what’s most important in their life, and it’s the people in our lives."

Lead image courtesy of the Catmull family.
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