Born with Ulnar Longitudinal Deficiency—Extremely Rare!

To all that may read this..

This is about my child's journey who was born with an EXTREMELY RARE disability called Ulnar Longitudinal Deficiency or Ulnar Clubhand.

When I was about seven months pregnant, I went in for my normal follow-up with my doctor to see the progress of my pregnancy and after the appointment was through I headed out the door and to the car. But then a nurse came out to ask me to please come back in because my doctor saw something "interesting" from the ultrasound. As I sat with my doctor she had informed me that my baby's right arm was missing three fingers, wrist bone, and absent of a forearm bone. She explained to me in simplest terms that this was a clash of my ex's and my genes which caused a lack in development in my sons bones/body parts, this more than likely occurred as early as a few weeks to a month after conceiving. Being a new mother and experiencing all of this firsthand was really overwhelming, emotionally straining, and my reaction to this news left me in a ball of tears for a few months.

But once the day came and my child was born... everything WE think about as people changed my point of view on life completely. It's not because this is my child, but he was born with a completely different feature of what we call or considered to be a "human." He had to be placed in an incubator for about two an a half days because of having Jaundice. I had to take my son to see a heart specialist because he had two holes in the upper chamber. After two and a half years waiting and praying, the holes closed to become a normal healthy heart.

Within the first year of my son's birth, everyone loved him because of those big beautiful brown eyes and he was extremely tiny; he was 4 pounds and 13 ounces.

After he turned one, people would look at him as we would be doing daily routines or even fun activities as a family might.

Such looks from people would be just your typical stare to a rude glaring expression. It's not surprising when a child or teenager would have a look of shock, confusion, or discomfort when seeing my sons' arm... because it's expected for the younger generation to be unaware of these rare cases.

But for an adult to stare and glare at a child with a disability/deformity is just completely unacceptable in my opinion. Of course NOT every adult will stare or glare at my child, but you'd be surprised as to how MANY adults have never seen a person with his condition. Staring isn't a crime or bad... all I'm stating is how uncomfortable and sometimes hurtful these stares can be. Although rare, Dominic's deficiency quite often, to the public eye, seems to be an oddity and occasionally is treated as if it's grotesque.

When I'd take him to a playground or a family restaurant where there are children he could maybe play with, some of the children would group up to look and stare at him as if he would be the entertainment. At first when these occurrences would take place I was nervous, upset, or irritated by the reactions. But as time went on I had to learn how to react in response to when this would happen. I am now a much stronger person and mother for my son.

For instance, my son and I had a grouped birthday party for him and a friend's child. Everybody was having a good time with smiles and laughter but at one brief moment one of the guests' children came up to my son. She was about five years old or so and she had a disgusted look upon her face directly at my son. The worlds that came out of this pretty little innocent child was a shocker. She said, "he's weird looking." I then looked straight at her mother waiting for a reaction to her daughters' words but after about 45 seconds none was forthcoming. So, I responded with a calm tone "No, honey. He's just different." After which the mother of the child responded. She rolled her eyes and said, "I don't think she meant it that way," and made excuses for her daughters' choice of words.

Another experience that had taken place was at a local grocery store. I was doing my usual food shopping with my son strapped in the child seat in a grocery cart, he was playing with a toy contently. As we walked by a couple, the middle aged woman stared SO STRONGLY with huge wide eyes that it even caught her spouse's attention. Her spouse looked at her and then looked in the direction of my son, once he saw my child he immediately looked away and whispered to her to stop starring. That was a major irritation for me because this was a grown woman, not a child, that was so rudely staring at my son and even her spouse had to get her to quit looking.

A more bizarre experience was at a fast food restaurant. I was with my sister, her daughter, and my son enjoying the afternoon. There were other children sitting with their parent at a table right by us. One of the children at the other table had stated loudly to their parent that they didn't like my son at all. The mother looked over at me with my son and looked straight back at her child and said, "Why don't you like him? Is it because he's different?" The child then shook his head up and down. The mother then said with a stern expression, "Well, that's not nice! How would you feel if you didn't have anyone to play with because other kids didn't like you for being different?!" The child then sank in their seat with embarrassment and said "I'd be sad." Then the mother ended the subject by saying to her child, "Well there you go. Don't be mean just because someone else looks different, they could be a fun friend to have."

I could go on and on sharing the experiences that we have had but its not necessary.

As he grows older I've come to realize that my son, regardless of his appearance or his capabilities, is a strong boy with the thrive and strive to do ANYTHING. He achieves all goals he sets on a daily basis.

He has taught me A LOT!