Deven

My name is Shanan  and I’m mom to Nick (b. 5/’84) and Deven (b. 1/’97). Deven was born missing his left hand below the elbow, which is what brought us to I-CAN.

We weren’t aware that Deven was missing his hand until he was actually born. Every time my OB did a sonogram, he would point out Deven’s heart, brain, spine, legs, boy parts and then say “Hmmm, he has his hands behind his head.” I pictured my baby languidly floating around in this relaxed position just waiting around to be born; sunglasses on, legs crossed, hands behind his head, you get the picture. I guess I should have asked a few more questions after hearing this for the third time, but honestly the thought of my child being born without a hand never crossed my mind. I had briefly considered the possibility that he might be born with one of the more commonly known birth defects, but since I had taken very good care of myself during my pregnancy and had every test available, I really wasn’t worried about anything.

My labor, which had to be induced, was progressing normally. At 9:00 that evening, my doctor came in and said that it was time to start pushing. This was it! The moment my husband and I had been waiting for for the past 9 months. Deven was almost here! It took exactly 9 minutes of pushing and there before my eyes was my precious little boy. I noticed immediately that his hand was missing and for a second I thought to myself “I wonder why his hand is folded under like that?” Then I realized that his hand wasn’t folded, it simply wasn’t there. I asked my doctor what was wrong with the baby’s hand and he mumbled something about “amniotic banding” and “these things just happen sometimes” and looked as bewildered as my husband and I did. To say we were shocked is a complete understatement. All these emotions were running through my head: joy, elation, disappointment, fear, curiosity. I was finally holding my sweet Deven in my arms, yet there were all these other thoughts that kept interrupting these first moments with my new son.

My husband Gary left the labor room to collect his thoughts and to tell our anxious family that Deven had been born. Nick, our 13 year old, was the first person that came into my room. I asked that he be let in first and alone so we could talk and he could meet his new brother. Nick was in tears because he knew something was wrong he just wasn’t sure what. I’ll never forget the look of relief on Nick’s face when I told him that Deven was missing his hand. He said “That’s it? I thought it was something much worse.” Oh how I wish I had his perspective at that exact moment.

Soon after, the rest of our family and friends began coming in to my labor room to meet Deven. The only thing that still makes me sad about these introductions is that what normally would have been a cheerful and joyous celebration had somehow turned somber. Instead of everyone saying “Congratulations!” they asked “Are you O.K.?” Instead of asking if they could hold Deven, they asked if I knew what caused his hand to be missing.

The first few weeks of Deven’s life passed in a daze of sleepless nights and adjusting to having a new baby in our home. We also spent this time talking to doctors, therapists, specialists, anyone we thought could tell us what had caused this and what the best course of action was. With each new person came a different opinion and a different recommendation. The only thing we kept hearing over and over was “you’ll have to fit Deven with a prosthesis before he is one.” The one thing we didn’t hear was a good reason as to why we should do this or what would happen if we didn’t. My husband and I finally figured out that the medical community probably didn’t have the answers we were looking for and decided that we would have to educate ourselves in order to make the best decision for Deven. I began by searching the internet for “amniotic banding” which led me to Jen Sullivan’s FAQ and the I-CAN home page. I was so relieved to have found other parents who had been down the same road we were now facing. It was this network of support that allowed my husband and I to learn, for the first time, that there were other options to fitting a UE child amputee with a prosthesis. We were able to hear first hand about the accomplishments of other children, like Deven, who were able to do everything without a prosthesis. It was also this support that gave us the courage to say “We’re not going to fit our son with a prosthesis until he expresses a desire to have one and can participate in the decision making process.”

Although we weren’t 100% sure we were doing the right thing in the beginning, we did know that our decision felt right at the time. I can now say that one year later that decision still feels right and we wouldn’t have things any other way. Deven is a bright, happy, normal one-year-old. He has the most beautiful blue eyes and an incredible smile that can light up a room. He has successfully accomplished all the things we were worried he would have difficulty doing. In fact, I have given up even thinking about what he won’t be able to do or trying to figure out ways that he can do things with only one hand. I have realized that only Deven will know what is best for Deven and how best to accomplish different tasks. Neither myself, doctors, nor therapists can help Deven because we all have two hands and that makes our approach to problem solving different than his. I have found that most people think that it’s impossible to do certain things without two hands, hence the push from professionals to put a “hand” where Deven doesn’t have one. So far, two hands haven’t been necessary for Deven and there is nothing that a child with two hands can do that Deven can’t. Deven will, and has, figured out ways to do things with no difficulty at all.

We know that this journey is far from over and that with each new developmental stage we will face new issues and challenges, however with the support of our friends, family and I-CAN, we now know that Deven truly CAN.

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