A Precious Little Boy: Eryn's Story

A Precious Little Boy: Eryn's Story

By Nonjabulo Mlangeni

In the latest blog on our website, we profile Eryn Kirby, who discovered her son has Klinefelter's in utero. Today, he's a healthy, joyful toddler who doesn't experience any of the symptoms associated with this condition. She hopes her story will be an encouragement to those who need it most.

Diagnosed In Utero

In early 2022, Eryn Kirby was pregnant for the second time and chose to do noninvasive prenatal testing (NIPT). Though she understood that it screens for genetic disorders, that wasn't at the forefront of her mind. Her primary thought was that she'd soon find out her baby's gender.

The results came a week later, and she was asked to receive them in person. Instead of being met by a doctor, she sat with a nurse practitioner, who didn't seem well-informed or qualified to share the news.

Without fully explaining what Klinefelter's is, she started to apologize for it. Over and over. Eryn was confused and alarmed.

"She just kept saying 'sorry,' so I started to tear up. I was like, 'what are you sorry about? What is so unfortunate [about it]? You're scaring me.'"

As the details came, Eryn learned that XXY is a chromosome abnormality that's only seen in boys. This is also how her baby's gender was revealed to her. Today, she wishes they'd led with that instead, and that the tone of that meeting hadn't been so somber.

"I wish she'd said something like, 'honestly, ma'am, it's one of the most common chromosomal abnormalities and there's men out there who don't even know they have it.'"

Instead, Eryn received a list of the many ways that XXY could make life difficult for her child, much like what you'd find in a basic online search.

"I can't even remember it all ... because my son is the total opposite," she says. "I erased a lot of it from my brain. But she just said all the bad things: like he might not be able to speak or to eat right, he might look a little different, he is 100% sterile ... just all these things, and I'm sobbing at that point."

An Unchanged Mind

Eryn also learned she could get an amniocentesis, which provides more accurate results than the NIPT. Because the amniocentesis comes with risk, moms are sometimes told it's not worth doing unless they're using the results to decide if they'll carry the baby to term.

"It sounded like a situation where you could risk having a miscarriage just for your own sanity and to [ease] your own anxiety," she says. "I'm the mom who'll go through with this [pregnancy] regardless, so knowing is not going to change my mind."

Instead, Eryn opted for a post-birth screening, where blood is drawn from the baby's heel and tested. Though she was committed to this course, it didn't make the wait any easier. She got back to the business of living, but there was a sense of worry that spread beneath the surface like groundwater.

"I thought, 'He's safe in my belly, but I'm scared that when he comes out, I'll have to help him eat or he won't be able to learn.'"

Once Micah was born, the blood test confirmed the NIPT result. But, by that time, Eryn had already met her baby, and knew he was "everything [she'd] ever wanted in a little boy." The diagnosis held even less power over her than it did before.

And then she made a vow. "I just laid over his body and prayed, 'Jesus, help me to help this baby grow. Please help us get through this together. Thank you for blessing me with him, because I'm the mom that will go hard and do all the things.'"

Meeting Milestones

In the state of Georgia, there's an early intervention program called Babies Can't Wait. While pregnant, Eryn had reached out to see if Micah would qualify. By the time he was born, she had everything lined up in case he needed extra help.

"I also set up an appointment with Emory Genetics, just in case," she remembers. "Then I contacted a pediatric urologist to get his body examined and see if everything was normal. This is my first boy, so I just didn't know what to expect."

As time went by, they attended all the standard checkups and received good reports. With each visit, there was progressive relief and, with each milestone met, a sense of coming out of the woods.

"At twelve months, he was standing," Eryn says. "He just hit them all, and it was amazing. He actually started talking at an earlier age than my first baby."

The most recent milestone might be the best yet. The day before our call, she officially took Micah off the Babies Can't Wait program. After all, it's been nearly three years since he was born, and he's never needed it.

Setting Boundaries

Eryn had some misgivings about sharing her son's diagnosis with the world. She imagines that other parents wrestle with this too.

On one hand, she wants to be open about the fact that her son is thriving. On the other, comments from ignorant people make her want to shrink back. Beyond that, she wants to consider her son's privacy, even at this age.

All these factors make Eryn question how much to share, where to share it, and with whom. As is often the case with parenting, she's figuring this part out as she goes.

"Part of me wonders: should I be sharing? But, like Ryan says, the more we speak the more educated people become ... Still, it's also scary."

And not just because of people who project their own assumptions onto kids with XXY. There are also well-meaning people who may treat them differently without even realizing it. She doesn't want someone else's behavior to cause her child to grow up with a complex.

When sharing the news with their circle, Eryn and her husband first made sure they knew everything they needed to know. She wanted to be grounded in information before breaking the news to family members, to minimize concern and distress.

"I prepared myself first, so that when I told them, I was able to [add context]. Like, 'this is what I've read, this is how other people are going about this situation.'"

The Road Ahead

Although these years have been easy, Eryn knows there could be hurdles ahead. Since Micah's still so young, they haven't had time to see how he fares in school or what the transition into puberty might look like. For now, she tries to stay informed, observant and ready to act on his behalf.

She encourages other parents—moms in particular—to be bold advocates and not shrink back due to low confidence or people-pleasing.

"A lot of women are meek or afraid to offend, but this is your life and this is your child. So, screw what they think of you—bring it up!"

As she looks forward, Eryn has learned not to let fear of the future steal the peace of the day. Being a super-planner by nature, she likes to account for every possible outcome. Yet this is an instance where only "time will tell what you'll go through."

Indeed, there are things you'll know now, things you'll know later, and things you'll figure out while you wait. "So that's basically my story," Eryn says, tying it all together.

"I'll sing from the rooftops that this [label] means nothing, and people shouldn't be afraid. In support groups, I see scared moms asking, 'what do I do? Do I get an abortion?' I just say no, and I love seeing all these other moms saying the same thing ... Today, I have a precious little boy who hasn't needed a thing."