My son is 3 months old. He has the "nail sign". Anyone else have this? It's a pinky that won't bend and a hook nail on it. He also has one overlapping toe. Not sure what other characteristics he may have since he's so young yet. We are starting therapies next week. He also has Pierre robin sequence. Just wondering if anyone is similar?

Hello and welcome. My son Henry is 15 months old and both his pinkies are that way. Those fingernails are AWFUL to try and cut (layers and extremely sensitive; very easy to bleed if not careful). I've met a woman whose now 25+ yr old son had his pinkies removed at an early age and she said she's never missed them, nor does he, since they are non-functional. Henry also has Pierre Robin's Sequence, as well as a bilateral cleft lip and palate we are in stages of fixing. His 4q breakpoint is 31.3. He has a congenital heart defect called DORV and will need reparative surgery sometime. Henry also has a couple overlapping toes and some club footing. He is still not sitting up on his own but getting stronger. He has lower set ears as well. But man, are we in total love with him. His 5 yr old brother just has to look over at him and Henry start laughing hysterically. He's a total chill, happy baby. He had severe reflux issues in the early months and ended up with a nissen surgery; he eats entirely via a G-tube button. I wish u luck and remember; one simple joyous day at a time. Peace. ~ c ~

Welcome to our world. My son Camron is 27 years old and also has 4q deletion at 31st quarter. He had the same pinkie fingers as you described. They were awful. They got caught on everything. The nail was impossible to trim. At the age of 4 yrs we had the pinkie fingers removed at the recommendation of the orthopedic surgeon. We were ambivalent about it at first but he assured us that his hands would be less noticeable without there fingers and Camron would never be able to use them as they were non-functional and could not be fixed. He was asbsoloutley right. Nobody ever notices that they are missing unless you point it out, and they were no longer in the way. Camron also had uni lateral cleft lip and palate, which were both repaired. Camron does not have overlapping toes, but has very small feet and also flat feet. Camron is developmentally delayed. At 27, he has cognitive level of a 2-3 year old. He does walk, but still has no verbal speech. He does have some behaviour issues, but is controlled well with medication. Mostly he is very loving. This is all just a brief synopsis of life with Camron. There is alot that fills in the blanks for his 27 yrs. It's been all about one day at a time to see how Camron would grow and develop. There was no guide of history of other cases for me to go by. Please feel free to ask any questions that you may have. I do know how it feels to not know whats ahead. And Chris, glad to see Henry is doing so well. I do keep up with ya'll thru your website.

Thank you so much for your descriptions. I am so fearful for him and I hope I get over that soon. He is such a good baby and I love him so much, it's just not what I had expected. If you'd like to follow our family blog it's keagsimonsen.blogspot.com I have a lot of info about Walt on there. Thanks for the support.

Hi there! I just read your messages and went to your blog. Your little boy is so beautiful. He reminds me so much of my son Hudson when he was little. He's still little, but will be one next month. I know what a difficult time I had the first couple months and I'm sure it's not easy for you. It gets easier! There are bad days, but it does get better. My son has 4q22.3-24 deletion. He doesn't have the pinkie issues, but his feet and fingers bend in weird places. Are you on any of the other groups? Facebook or yahoo? I've found that they are also very helpful with information.