Alden - The Woodlands, Texas
Our son Alden was born at home in February, 2008. After only 4 hours of labor, we were very excited and overwhelmed to meet our little guy! As soon as my midwife placed him on my chest he lifted up his arm revealing his "little hand". I remember thinking, peacefully "Okay, move on...fall in love with him!". My husband whispered in disbelieve "is that his hand?" and I nodded. He simply and sincerely comforted me saying "It's okay."
We had an ultrasound done at 20 weeks and the doctor was VERY impersonal- if he noticed, he did not share the anomaly with us. My midwife was a doll! She made sure he had no other anomalies and then came by every day that week to make sure he was blossoming! Our pediatrician said not to worry, that we would re asses at 6 months.
At 3 weeks Alden was hospitalized for Pertussis (the Whooping Cough) at Texas Children's Hospital. This was a blessing in disguise! The pediatrician in the NICU ordered X-rays that night! She invited the Plastic Surgeon and Geneticist to come and do evaluations! It helped us get the ball rolling. We found out that Alden has a complete wrist, a 'floating' thumb bone, and the rest was hard to be clear on- because he was so tiny the bones are not hardened. They asked us to come back for more X-rays after his first birthday. Our plastic surgeon has suggested we remove the 4 'nubbins' he has for fingers (tiny little nails too!) as they are of no significant use. We fear they will get snagged on something, they are fleshy and flimsy. The plastic surgeon also plans to repair his thumb to make it more useful. We have been told by a 25 yr old with only nubbins for all 5 digits that "if he has a thumb, he doesn't really need the nubbies"- which was helpful to me, because it is a very hard decision to put your baby through a life changing surgury.
We have been blessed to make friendships with others on Superhands as well as the Yahoo! ABS group (Amniotic Band Syndrome). We have chosen to take part in a survey studying mothers and babies with ABS and Transverse Limb Deficiency (which is what they are labeling Alden). I hope that we find more information to help others in the future! We have been discouraged by the amount of information available! We have several doctors all giving a different diagnosis.
We chose to have Physical Therapy with a local group that provides in-home therapy at no-or little cost to the family! We wanted to make sure that Alden was learning to use both hands equally- and not to favor his 'regular' hand. I have found this to be VERY helpful. I do not think therapy is necessary, I could have done it on my own I am sure- but I wanted to make sure we took every opportunity to enable him to be the best he can be! We are so thankful for our Physical Therapist, we love her!
I am very proud to see that Alden has mastered crawling with his 'little hand', and feeding himself as well! NOTHING stops him! He has the sweetest spirit and is an absolute joy to have around! Our 3 yr old daughter, Nova, thinks he is just precious and loves to kiss his little hand! I am anxious about the thought of upcoming surgery....we will update you!
Please feel free to contact Alden's parents via email. The would love to hear from you.
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