ANNA ROSE HERSBERGER

Around the world, approximately 90% of pregnancies diagnosed with Down syndrome are terminated.

Why? FEAR.

Fear of the unknown. Fear of life-changing. Fear of medical complications. Fear of what family and friends will say. Fear of this new journey.

My pregnancy with Anna Rose was unlike my first two daughters.

Early on, a nurse called to inform me that my child would have Down syndrome. Almost in the same breath, she asked if I wanted to terminate the pregnancy. I hung up and turned to my husband. Thankfully, he was my rock—this diagnosis didn’t change anything for him.

But the challenges were only beginning.

My midwife refused to continue my care and told me to find another provider. After many calls, I finally found an OB willing to take me on. At my first appointment, I was told I had only a few more weeks to terminate, and that was after I had already told them my decision—I was keeping my baby. Yet, every visit, they asked me the same question.

I had gestational diabetes in my previous pregnancies, so I knew I needed to be tested again. The doctors resisted, dismissing my concerns. I insisted, took the test, and was diagnosed once more. Their response? "Do you want to terminate? The baby has a higher chance of complications." My answer remained NO.

Then, an ultrasound revealed a heart defect. "Do you want to terminate?" they asked again. NO.

I changed doctors.

Genetic counseling was next. My husband and I sat in a cold, sterile room while a doctor made me feel that this was my fault—because of my age. Then came the list of worst-case scenarios: a large hole in her heart, concerns about her brain and liver, my diabetes making everything riskier. 25 % of stillbirth. And then, the question again: "Do you want to terminate?"

That appointment was one of the hardest experiences of my life.

And still, my answer was NO.

By my second trimester, no doctor wanted to take me as a new patient, especially with a baby diagnosed with Down Syndrome. I managed to get a few hospital checkups, but only as a walk-in patient.

When it was time for delivery, I was attended by the doctor who was on call. To this day, I don’t even know her name.

As soon as Anna Rose was born, the nurse whispered, "I’m so sorry… she has Down Syndrome."

I didn’t care. "Is she alive? Can she breathe?" She wasn’t crying.

They rushed her to the NICU and closed the door. They turned off the light in my room and left me alone. This was awful!

When I finally saw her in the incubator, my knees hit the floor, and I cried—not because she had Down Syndrome, but because of how many times they had asked if I didn’t want her. How many other parents would never have this beautiful child?

Then, I noticed a rocking chair beside the incubator. On it sat a welcome basket from our local Down syndrome group—a book, a blanket, a little heart, and a beautiful message:

"She is welcome here. Congratulations!"

For the first time, someone acknowledged her life with joy.

When I searched for Down Syndrome information online, all I found were clinical descriptions, medical concerns, and genetic explanations. But I didn’t see their beautiful faces—their full, vibrant lives.

My husband and I decided to take a stand, and we created the "Don’t Fear Me" exhibit.

We want to educate our families, friends, colleagues, and professionals that Down syndrome is nothing to fear. Our children grow, learn, play, and feel—just like any other child. In fact, I believe it’s the rest of us who are missing something—an extra chromosome of LOVE.

Anna Rose loves life. She loves her family, her friends, and—most beautifully—herself.

She has taught me more than I could have imagined. My life is better with her in it.

And our journey has only just begun.

My name is Larry Hersberger, and I am the lucky daddy of Anna Rose Hersberger. My wife Ela and I were told our daughter, Anna Rose, would be born with Down Syndrome. We were adamant that she would not only be born, but she would also be loved and nurtured. The reality became so much more. The journey of being the father of Anna Rose has been the greatest and most eye-opening journey of my life.  

To be fully transparent, I did not know anything about Down Syndrome, however, I became fully committed to learning even prior to the birth of Anna Rose. What I did not expect was the fact that Anna Rose would be my main teacher. 

Down Syndrome itself was a mystery to me, and it was fairly easy to read up on the how, why, what, and so on. What I was not expecting was the extraordinary level of love and joy that would pour out of this beautiful child. I did not expect to see her "do" and "achieve" on a daily basis...and this began after she was born. 

Anna Rose was born with a huge hole in her heart and, as it turned out, multiple holes. She endured not one but two open heart surgeries, as the first one failed. She brushed them off as if it were just a normal part of being a baby. It was incredible to witness and to say we are grateful to the team of doctors at St. Joseph's Hospital in Tampa who saved her life is an extreme understatement. 

This is where the lessons begin, as I began seeing her character (not her Down Syndrome) at this early time in her life. We even added another name, Victoria, as her middle name for Anna Rose was such a little fighter. As the nurses and doctors said, she is a "victory per day" and advancing better than we could hope. She was a little rock star in the ICU ward.

As Anna Rose grew, this "can do" and curious attitude and joy about life continued daily. Every day starts with her waking up, with arms open wide and her explaining emphatically "WOW". (sometimes at 3:00 in the morning, but we will take it)

As with any child, Anna Rose has her ups and downs. Her range of emotions is also just like any other child; however, they are all wrapped in a joyous spirit of love and kindness. This has been inspiring to watch. I thought to myself, "Why can't we all be like that with each other?"

To date, Anna Rose is in school and developing beautifully. She is speaking, running, hugging, loving and laughing just like any other child. She may be delayed in her learning, but oh how she is determined to learn, develop, and do. She is a little powerhouse who is making a big difference to all who meet her.

This was our joyous household reality. The real world can sometimes be a very different and uneducated place. 

Most people, not all, but most do not know anything about Down Syndrome. Many think it is a disease. Many will say "I am so sorry" when they find out we have a child with Down Syndrome. (They shouldn't be...that is for sure). 

Here are a few perceptions I have witnessed.

GENERAL MISUNDERSTANDING AND STEREOTYPE 

Despite progress in recent years, some people still hold misconceptions or very outdated views about Down Syndrome. 

I see assumptions that people with Down syndrome have limited potential or the ability to provide concrete value to society. They are seen as sweet and joyous when little, but once an adult, the view changes, and many are set aside or dismissed. These stereotypes can lead to discrimination or marginalization.

Emotional Responses 

To me, it seems people with Down syndrome are often viewed with sympathy or seen as "special" because of their extra chromosome. While this can sometimes come from a place of love and caring, it can also inadvertently reinforce a sense of limited capabilities.

Is the bar low or high? It makes a big difference!

Many are happy to see people with Down Syndrome grow up to do the most minimal of work. If that attitude starts in the home, that may in fact come to fruition. People will say, "Isn't that sweet that they have a job?" 

This attitude must change as it is proven that people with Down Syndrome have achieved very high levels in our society. Some examples, although not common for various reasons, are lawyers, congresswoman and doctor such as Dr. Karen Gaffney. 

People who live with Down Syndrome are capable of finding fulfilling work in a range of different job roles and workplaces. They simply need to have the bar set high, education, opportunity, and positive nurturing. 

I also have learned and acknowledged there are many levels of Down Syndrome and that people born with Down Syndrome are not all created equal, nor have the same level of ability. (just like the rest of us).

Bullying

Bullies are going to be there for all children, and children with Down Syndrome are no exception. In fact, they can be subject to higher levels of bullying. This can also extend to adulthood.

As a father of a beautiful and wonderful child living with Down Syndrome, it is my job not only to protect her from bullies but to teach Anna Rose to know how to effectively stand up for herself using her profound love and kindness as her staff. 

Advocacy and Awareness. 

Anna Rose has given sooo much to my wife, myself, and our family. It is important to me to give back, not only to her but to the world. 

It has become my mission, through my experiences and our art, to educate the masses about the exciting potential of people living with Down Syndrome. I would like to see people become more knowledgeable, not simply have misguided sympathy, even when it comes from the heart.

Our artwork mission for the "Don't Fear Me" Collection

1. The general public can see people living with Down Syndrome as a regular part of society, not as a separate entity.

2. Expecting mothers to see and feel the joy that awaits them and choose to have their children as opposed to abortion.

3. Empower people living with Down Syndrome to see that they are part of our society just like anyone else. 

4. For all to see the beauty that is Down Syndrome and that people living with Down Syndrome are not to be feared at all. 

5. To educate the masses that people can live full and rewarding lives. 

Thank you to our amazing daughter, Anna Rose, for teaching daddy to understand and learn so much about you, Down Syndrome, and life itself. There is still so much to learn, and I love the journey.

It is my honor to be your daddy and to advocate for you and others. We are indeed the lucky few...I now fully understand.