XXY diagnosis

An XXY Diagnosis: The Voice of Luke Breard

Luke Breard is a 29-year-old man living in Baton Rouge, Louisiana. When he and his wife were unable to conceive, they discovered he had an unknown diagnosis. Luke has been living his entire life with Klinefelter syndrome. This is the story of Luke’s XXY diagnosis, and how he became an adoptive father to two boys.

Childhood:

XXY diagnosisLuke is the youngest of three children. As a child, Luke was diagnosed with delayed speech. However, Luke’s diagnosis was “nondescript” as far as the pain he experienced surrounding his speech delay. He started speaking later than what’s considered normal for most children. When he did speak, his words came out jumbled, and he could only say vowels. It was very difficult for him to communicate.

His family adapted, and created a makeshift sign language to help him communicate. His parents took him to specialists to see what was going on. Luke’s hearing, and cognitive ability were assessed, but he was cleared. There seemed to be a block in his speech, preventing him from getting his thoughts out. His struggle to articulate his thoughts created a stutter. As he began speaking more, his stutter began to become more pronounced.

Living with speech difficulties:

Socially, this was difficult. As a young kid, Luke could learn and adapt to how to communicate with his own family, but his friends didn’t know the signs, or how to communicate with him. There were plenty of neighborhood kids he could play sports with, and he built some friendships that way. Luke would get frustrated when people couldn’t understand him. It really bothered him, especially because he hated having to repeat himself. He had to do it often, because he couldn’t pronounce things like everyone else. If he could pronounce the word, he stuttered, and couldn’t get the word out. He found various things would trigger his stutter, such as excitement. He would know exactly what he wanted to say, but when it went out of his mouth it “felt like it couldn’t even fall out”.

Living with a stutter:

The stutter didn’t change if he was in a group of one or two friends, or a big group. He felt it was “kind of a mystery” why it happened sometimes, and not others. Some situations would make it worse, such as talking on the phone. He would feel trapped, and try to substitute another word to get around it. Even saying the K sound in his name was difficult. In early grade school, he was bullied, stuttered, and had difficulty speaking. It was hard for him socially. He had a couple of friends here and there, but it was different from other students’ experiences.

School:

Luke did fine academically. He didn’t say a word, was quiet, and reserved in class. This made him a favorite with his teachers, as he never caused any disturbances. He was also diagnosed with failing eyesight, and couldn’t always see what was written on the board. However, he never asked for help, and never asked any questions. He had a lot of social anxiety due to his stutter. In middle school, he was tall and skinny. He couldn’t gain weight despite working out, or no matter what he ate, and was made fun of for that, too. Luke could never add any muscle, especially on his upper body.

Luke did well in high school. He went to an academically sound school, and enjoyed his classes. He was one of his school’s salutatorians, and graduated with 27 hours of college credit. While he hit puberty, he was a little late developing body hair, but he was happy he wasn’t the hairiest guy.

Sports were an escape:

Throughout school, sports were an outlet for Luke. He was always active, and spent hours outside playing pickup games. In school, he played tennis, golf, basketball, and played baseball until he was 12. He played basketball all the way through high school.

College years:

XXY diagnosisAs graduation approached, Luke applied to two colleges. He didn’t want to stay in his hometown of Monroe, and felt college was his chance to leave. Luke applied to Louisiana State University, and Mississippi State University. Ultimately, he chose to attend LSU, and moved onto campus to attend his first year of school. Living on campus was “so fun”. Even though he had three best friends from high school also attending LSU, living on campus helped Luke meet more people. Leaving home helped him embrace college life, and all he could get out of it.

He didn’t know what he wanted to do for a career, but did well academically. Although he started out as a biology major, after his first bio class he realized it wasn’t for him. Luke switched to business management his sophomore year, which he really enjoyed. He liked the diversity of classes, and felt what he was learning could be applied to anything.

Expanding his social circle:

Throughout college, Luke remained friends with his high school friends. He came to college as a Christian, and his faith was very important to him. In his first year, he got involved in a Christian organization on campus. During his sophomore year, he moved off campus to an apartment, where he lived next to his friends from high school. He grew his circle of friends, and met many new people.

Reframing a mindset:

Once at school, Luke found a local church and connected with the pastor, Byron. He became a mentor to Luke, and they spent a lot of time together. One day, the pastor was discussing how not every culture has a written language, and many languages were oral before written language. Byron suggested that reading and writing is such a gift, and something to be thankful for. Byron felt it was a privilege to be able to use that to express himself.

Speech as a gift:

When Luke thought about it, he felt it wasn’t a big jump to suggest speech is a gift. Throughout his life, he’d seen his difficulties with speech and stuttering as a curse from God. Luke’s diagnosis tormented him. He couldn’t escape it, and it would always come up during inopportune times. He would think, “Why me? Why can’t I talk like everyone else; it’s so easy for them.” However, when he started thinking of speech as a gift and something to be thankful for, it changed him. He went from being quiet, shy, reserved, and introverted to having a voice for the first time.

Luke blossomed. By his sophomore year, he was unrecognizable. Everything was markedly different with his speech and personality. As Luke grew in confidence, he slowed down, and was confident in speaking slowly.

Luke continued to build up his listening and empathy skills. Now, he “really loves it”, and feels like he’s made to speak, connect and communicate. He finds energy and joy in talking with others. It became a competitive advantage of sorts, overcoming his difficulty and coming out the other side. He enjoys speaking and connecting with others.

Meeting Caroline:XXY diagnosis

After getting to know his future wife Caroline during a summer ministry program, they began building a relationship. Even though they’d grown up together in Monroe, they hadn’t gotten to know each other until college.

Caroline graduated a year ahead of him, and went to China to teach English at a community college. They made the long-distance work, and while overseas Caroline discovered a love for teaching. Luke graduated with a Bachelor of Science in Business Management, and soon after Caroline came home from China. A few months later they got engaged, and were married in April 2016.

Life after college:

After graduating, Luke landed a job at a call center in customer service. This position was another layer in overcoming his speech difficulties; he never would’ve chosen a customer service position before. He was good at it, and developed the skills for it. Even though some calls were difficult, and he struggled to say “hello,” he persevered. He eventually moved over to marketing and sales, and has been doing that for the past four years. He got an MBA online, and graduated in May 2021.

Caroline got a job at a small Christian school, and was able to fulfill her love of teaching. She also developed strong relationships with her coworkers, creating many close friendships over the years.

Luke’s XXY Diagnosis:

XXY diagnosisWhen Luke was 27-years-old, he received an unexpected diagnosis. After trying to conceive for about a year, Luke went in for a checkup. The doctor’s report left Luke stunned: he had zero viable sperm in the semen sample he provided. In a phone call, the doctor said it was “abnormal” to have no sperm. He suggested it was “very likely” Luke had something called Klinefelter syndrome. After letting Luke know he needed further testing to formalize the diagnosis, Luke asked “What do I tell my wife right now?” The doctor recommended telling her the test was abnormal, and it would be a few days before they had a confirmed diagnosis.

Confirming the diagnosis:

In November 2019, Luke and his wife met with a urologist for the formal diagnosis. During the appointment, the urologist disclosed he and his wife were also experiencing infertility. They were about to start IVF. The doctor sharing his story was comforting for Luke, who felt the provider had “a lot of empathy” for their situation. He wasn’t aware of other symptoms associated with KS, and Luke hadn’t felt he’d experienced any during his life. They all cried over the news, especially because of the infertility. It wasn’t something Luke or his wife had expected to encounter.

Sharing with family:

After receiving his XXY diagnosis, Luke and his wife went to their car and called their parents. With the Thanksgiving holiday approaching, they wanted to let their families know what was going on. 

However, Luke was glad they immediately shared the news with their families. It allowed them to share in the pain Luke and his wife were experiencing, as well as gave everyone space to grieve. Luke was glad they’d told their families. He said, “The longer you hold it in without telling anyone, the heavier and heavier it gets. You don’t realize you’re holding it in until you release it, and then it’s so freeing.”

Grieving Luke’s diagnosis:

XXY diagnosisLuke and his wife were both stunned by the unexpected diagnosis. Luke had heard some people are what’s referred to as “pre-grievers”, meaning they experience the emotions of grief right away. Caroline is one of those people, and felt very emotional about the XXY diagnosis. She cried upon hearing the news, and for many nights after.

However, Luke fell into the category of being a “post-griever,” meaning it took him longer to process through his feelings. In general, he’s someone who tends to take longer to know what he feels about something. While processing, Luke turned to journaling to help sort through his emotions. He also wrote poems, which gave him the freedom to express how he was feeling.

Sharing with others, and finding support:

For Luke, it felt good to tell people. The night they found out was the Monday before Thanksgiving. They’d planned to hang out with a good friend, Bill. Although distraught over the news, Luke hated the thought of canceling. Caroline suggested instead of going out, they invite Bill over. Bill arrived with a six-pack, and cried with them as they processed the news together. As they continued to share the news with people, they felt love and support in so many ways.

It took Luke three or four months to sit with the news and process it. Even though he’s come to terms with it now, Luke said there’s also a part of him that will never be fully over it. Different things can bring those emotions back, even something harmless that someone says, or seeing the photo of a friend’s child. Even though he went through his “original grieving process,” there are still times when it pops up.

Staying positive:

Even while working through his feelings, Luke maintained a positive outlook. Within a week, he felt he “had it my whole life. I’ve had it on my best days and worst days, I just didn’t know it”. Luke didn’t feel emasculated by the XXY diagnosis, nor did he struggle to accept it, other than the infertility aspect. He felt he’d been created that way by God, and it was how he’d always been his entire life.

Starting a family:

XXY diagnosisAs they continued to absorb the shock of the XXY diagnosis, Luke and Caroline turned toward their church. They were very involved with congregational life, and found a small group of other young adults who were experiencing infertility. As they all shared their experiences, they began to develop close friendships based on their shared experiences.

After receiving the XXY diagnosis, the couple weighed their options. They looked into micro TESE, donor sperm, and adoption. Pretty early on, Luke knew he didn’t want to pursue the donor sperm route. To him, IVF felt like a “really expensive lottery.” Using a sperm bank felt cold and impersonal, which wasn’t how he envisioned his journey to fatherhood beginning. He didn’t have the emotional capacity for IVF, so for him, that door was closed.

Luke and Caroline processed their feelings about their options individually, and then discussed them together. Adoption was the clear answer for them, and Luke felt God had given him the peace he needed to move forward. In January 2020, they decided to pursue adoption to build their family.

Adopting:

Once the decision was made, they didn’t wait to put it into action. They began gathering information, and talked to anyone they knew who was involved in an adoption. They wanted an infant, and to adopt domestically. As they weeded through their options, they decided to work with an adoption agency to help connect them with their future child.

However, private adoptions are costly, and the couple needed about $50,000 to get the ball rolling. They worked with adoption consultants, who provided them with access to some of the bigger adoption agencies in some of the bigger cities nearby. Through the consultants, Luke and Caroline were referred to their lawyer and social worker, who they loved.

Starting the process:

As the process of fingerprinting, home studies, and checking references started, the couple began fundraising. Although the COVID-19 shutdowns put a wrench in their plans, it didn’t stop them from moving forward. Despite the turmoil of the outside world, donations poured in. Each gift felt “humbling,” especially those who came from “the people you least expect”, or those they didn’t even know. They finally raised enough money to begin putting in applications with some of the bigger agencies.

Even though this was the route they’d chosen, there were aspects that felt impersonal to Luke. He hated that bringing a child home was reduced to checking boxes, and answering questions about what race, special needs, or levels of substance abuse they would accept in a child. He felt if there’s a child that needs a family, he wanted to be connected with them.

An unexpected surprise:

However, before they could put in the applications, they received an unexpected phone call. On July 24th, 2020, they learned they would be parents. A birth mother had chosen to place her baby with them. Six days later, they were with her at the hospital, and their son was born. It was unbelievable to Luke and Caroline. They’d anticipated waiting two or more years to be matched with a birth mom, and now they were bringing their son home from the hospital. They felt grateful to have the cushion of the raised funds to help pay for legal fees, other costs associated with the adoption, and purchasing all the things a new baby would need.

A second son:

XXY diagnosisA year later, they received another phone call. It was a different birth mother, in a different situation. The call came on July 1st, and they learned she was due October 10th, 2021. They were excited to have a few months to prepare for their second baby. However, she went into the hospital unexpectedly, and delivered their son at 28 weeks. After spending eight weeks in the NICU, their second son was released to them. He’s been home for about five weeks now.

Now, Caroline and Luke are the proud parents of two healthy, beautiful, baby boys. Together, they’re raising David Michael, who is 15 months old, and Johnathan, who is two and a half months.

Creating a family:

XXY diagnosisWhen the door closed to Luke and Caroline on having biological children, he said it opened up so many possibilities of adding to their family. For them, there’s no longer a biological clock, and “the possibilities are endless” for adding to their family. Though there was some grief for the lost dream of what they expected their family to look like, Luke “couldn’t imagine it any other way.” His boys are “beautiful and adorable”.

Finding closure:

They feel “so blessed and thankful for how things worked out”. Even though the XXY diagnosis was unexpected, it gave them a sense of closure. They’ve had friends with unexplained infertility, and watched them struggle with grief and stress. Regarding infertility, Luke said it’s an “invisible thing; you can’t see when someone is infertile. It’s an invisible burden they’re carrying with them.” Once they had that sense of peace and closure, they could move forward down a different path. They were ready to say yes to anything that would bring them their family.

Luke’s message to mothers:

When asked what he wanted mothers receiving a prenatal XXY diagnosis for their sons to know, Luke offered reassurance. He never once thought he had any kind of disability, and had a full and rich childhood. Luke doesn’t know who he would be today without the struggles he experienced, and has “been so blessed in so many ways”.

He encouraged parents to learn more about Klinefelter syndrome, and to see the beauty in how their sons process things, and communicate. Luke suggested focusing on the things they tend to be gifted in, skills they have, and the different ways they do things. Additionally, “there’s so much value and beauty in that. There’s a real diversity they bring to the world; a kind of difference. There are so many things to be celebrated about that.”

Message to others with an XXY Diagnosis:

To guys who are receiving the XXY diagnosis, Luke suggested they dive into the grieving process. He advised that “things with grief, you can’t get around. You can’t skip ahead. Some parts are painful for some, and not for others. There’s always something to work through, so take your time and share with people.” He also recommended reaching out to others, and to “open up to those you’re close to, because that burden of holding onto things, really wears on people. If you could start with a piece and slowly in your own way and time open up, it’s really rewarding and freeing.” In his own journey, Luke has found it very healing to journal, first writing to himself, and then sharing with friends and family.

XXY diagnosis

Sharing the story of Luke’s XXY diagnosis:

As Luke and Caroline began sharing the story of Luke’s XXY diagnosis, they were surprised to find all the stories of adoption and infertility around them. There were “so many people,” who they never suspected were adopted, or were struggling with infertility. In particular, sharing their story allowed Caroline to provide support to many women in her life. She could share with them, and encourage them in really special and intimate ways. Luke said, “When it comes to fertility and adoption, when you connect with someone and share with them, you’re connected in even more intimate ways than just people you see every day. It strikes a special cord, and I think that’s a beautiful thing and you should lean into that. Start there”.

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