Special Needs    

Our beautiful "little" daughter



How a special needs child helped us celebrate our differences

 

My husband, Jimmy, and I met in elementary school and quickly became friends. When elementary school ended, we went our separate ways.

At the age of 17, we ran into each other again and began dating. By the time we were twenty-five we were married, madly in love and enthusiastic about life and all of the possibilities that the world had to offer.

Our life together, and what we meant to each other, was exactly what we had always wanted. We began dreaming of having children and all the wonderful things that go along with them: playing ball with dad, gardening with mom and all of those little joys.

Four years ago, with everything in order, Jimmy and I decided to start our family. Three months into our first pregnancy our journey came to a sudden halt with the haunting news of a miscarriage. Everything seemed to fall apart and our lives were at a standstill. We grieved for quite some time.

In the fall of 2005, we were happily back on our journey with another positive pregnancy test. This time I was scared, with all the possibilities of what could go wrong still fresh in my mind. We decided to take this pregnancy day by day.

It turned out to be a difficult pregnancy at times. I was on bed rest for about three months, and I was monitored very closely with many sonograms and doctor visits. Although it was difficult, we were thankful for every day and we loved this baby very much. We were happy. This was what we dreamed of.

One night in June of 2006, my labor began with a swoosh. Labor went on forever and I was grateful to have Jimmy by my side. Toward the end, the baby’s heart rate began dropping. The nurses urged me to push and warned me of the urgency to “get this baby out.” I pushed with everything I had left in me and our baby girl was born.

The nurse placed her on my chest and I was so excited to finally see her. I had fallen in love with her from the moment I knew I was pregnant and finally she was here in all her glory, so beautiful and oh so perfect.

Jimmy walked up beside us and said her name, Hailey. She looked him square in the eyes as if she knew him forever. I never saw a newborn make eye contact like that before, and right then we knew she was as special as could be.

The nurse soon came in and wanted to clean and weigh her. As she picked her up, I was able to get a good look at her, and for a brief second, I thought she looked like a dwarf. Being caught up in the moment of my love for her and so exhausted, I let the thought slip from my mind.

All of a sudden, the room became very busy again. My baby girl was being measured and weighed, and then measured again. As the doctor was finishing up with me, I struggled to see what they were doing with Hailey, but nurses and doctors kept getting in the way. It all seemed to happen so quickly and before

I knew it, everyone was gone. I felt so alone with the room still spinning. I knew that something was wrong. I understood that at that hospital the baby was supposed to remain in the room with me at all times, but they took her out.

Soon after, Jimmy came in the room. When I asked where the baby was, he sat beside me and took my hand. He said that she was okay, then added, “The doctor thinks she might have a thyroid condition or a hint of dwarfism.”

“Well, where is he?” I asked. “I need to speak to him.” “What does that mean?” “How do we know which it is?” I had so many questions and no one to ask. Jimmy left to get the doctor. When the doctor entered the room, I had a million questions that all seemed to come out of my mouth at once.

He told me that he was leaning in the direction of dwarfism, but it is rare and that he would need to check his textbooks. He had mentioned that he had no experience with it before. I thought to myself, he needs to check his text books … what in the world does that mean? Then he walked out of the room as if nothing happened. We were given no further information, no guidance and no answers as to what this all meant to my daughter, her health, and our family.

That night, my sister tried to find out as much information as she could on the Internet. At the time it was our only option, and I now wonder if it was our biggest mistake. We were quickly introduced to clinical photos of people of short stature, with black lines covering their eyes to hide their identity, and worst case scenarios.

In the midst of all this confusion we were forced to make sense of clinical terms so complicated to pronounce and health issues we have never heard of. It was supposed to be a time of joy, yet we were overwhelmed and confused and it seemed like no one was around to help.

On top of it all, I was becoming increasingly concerned about Hailey’s breathing. It sounded so different.

When I mentioned it to the doctor, he said a specialist should look at her. We were transferred to Westchester Medical Center, where we spent close to a week looking for more answers. Much to our surprise, the runaround continued with x-rays, heart monitors and so many wires. We were told that her respiratory issues were not due to sleep apnea, and that was that.

We were released from the hospital with no diagnosis and nowhere to go.

While the other families that gave birth the same day were home enjoying their new lives, Jimmy and I were scrambling from specialist to specialist trying to get answers. Between fighting with insurance companies and dealing with doctors, we were missing out on precious time with our baby.

We bounced around to three different geneticists, a neurologist, a pulminologist and her pediatrician. We waited eagerly for two weeks for the results of her blood test, which would for certain give us her diagnoses. Those two weeks seemed like a lifetime. The phone rang and the diagnosis was Achondroplasia, the most common form of dwarfism. What does this mean and where do we go from here?

Many phone calls and three months later, we reached someone who told us about a Little People of America (LPA) event that was being held in our area the next day. With little time to think about it, we decided to go. We had no idea what it was about or what to expect.

The information that we received at that event was priceless. It was unfortunate that it had taken us so long to find our way. As a result of the connections we made that day, we were referred to doctors with the experience and compassion we needed for our daughter.

At that LPA meeting I shared my story with a woman whose daughter is in her 30s. I was surprised to learn that her story was not much different from mine. Why is it that in more than 30 years the hospitals still do not have any basic knowledge on dwarfism or a compassionate way of telling a family whose child may be diagnosed with some type of dwarfism? We will never get back those very special first days with our new baby, which were spent trying to find the best care for our daughter.

It still amazes me how much of a difference a year or two makes. We have learned so many things in such a short period of time. When my daughter was first born we wondered how her condition would affect her life as well as ours. We wondered how she would do in the real world, which at times can be quite cruel.

We now celebrate our difference and embrace who we are. We realize that a person’s rude stares and comments are a reflection of themselves and their upbringing rather than a reflection of a person’s difference. We would not want our daughter any other way. Her being a Little Person has shaped our lives and made us realize that it is okay to be different. If she was not “little” she would not be Hailey.

We are certain that at times she will want to be just like everyone else, yet the world is sure to let her know that she is different. We are prepared to march through life’s challenges where being a little different can make such a big difference.  We love who we are and we love our family. We hope to instill confidence, compassion and strength in her, which will carry her through her days.

We strive to educate people about dwarfism. Unfortunately in today’s society, the most exposure that people of short stature receive are from roles in the entertainment industry.

It is important to remember that they also play a positive role in society as doctors, lawyers, teachers, Moms and Dads.

Just because someone looks different, does not mean that they do not deserve the same opportunities and respect as the next person.

Today we are currently active in supporting the Little People of America organization and continue to work as a team to build up our local chapter (www.lpa-midhudson.org) through fundraisers and events. We help support and provide information to families in need, especially new parents of children diagnosed with a form of dwarfism.

 

Darlene Korpai is a stay-at-home mom living with her family in Sullivan County.