I JUST FINISHED WATCHING A BABY STORY WITH BABY GILBERT. I JUST WANTED TO TELL THE PARENTS THAT MY SON WAS ALSO BORN WITH A HAND DEFORMITY(HIS RIGHT HAND). THE DOCTORS DIAGNOSED IT AS POLAND SYNDROME. HE IS 2 NOW AND EVERYTHING IS WONDERFUL. HE HOLDS CRAYONS, PICKS UP CHEERIOS HE DOES EVERYTHING WITH HIS HAND. HE HASN'T HAD ANY SURGERIES.HE MAY NEED TO HAVE THE SKIN CUT BETWEEN HIS FINGERS AT SOME POINT BUT RIGHT NOW HE DOESN'T. I FIND MOST PEOPLE WANT TO ASK QUESTIONS AND I WISH THEY WOULD BECAUSE I DON'T MIND EXPLAINING IT. HANG IN THERE GILBERT FAMILY EVERYTHING WILL BE FINE. YOU WILL BE IN MY THOUGHTS.

My nephew is almost 3 but he too was born with the same 1 hand deformity. It has been linked to a vascular episode that occurred when my SIL was pregnant. She is trying for her 2nd baby now and will be put on blood thinners (by injection) when she does become pregnant to try to avoid this again. He did have surgery at 9 mo to remove a bone from his toe and attach it to his "pinky" and the doctors were able to deepen the web of the thumb. He is doing great. I just wanted to encourage the Gilbert family and let them know that there are excellent hand surgeons out there. My nephew sees a doctor in Baltimore, MD. I wish you all the best and lots of joy with Joey!

Hi Barb,
This is Dori Gilbert from the Baby Story. Thank you for your support. Since the show we had a chance to go to Shriners Hospital in Philly and get more answers. Joey has Symbrachadactly. Their studies conclude that this can happen in the womb during week 8 to 10 of the pregnancy, due to a disruption of the blood flow to the extremity during the growing phase, but they don't know what causes this and it is not genetic which I was worried about. It is a 1 out of 35,000 chance that it can happen during a pregnancy.
Joey is doing good he is almost 8 months old and is about to crawl any day now. It is amazing how he uses both his right hand along with his left wrist and palm to pick things up. We have another doctor appointment in the end of July to find out what they feel can or can't be done for him.
Did you know prior to giving birth about your son's hand? What do you do when you are out in public and people keep staring and whisper do you ever address it or ignore it? Thank you again for your support and I am glad to hear that your son is doing wonderfully.
Dori

As a side note, when my nephew was born, I knew my own children would want to know why his hand was different (at the time I had 2 boys ages 6 and 3)...I reminded them about Nemo's lucky fin and how even though it LOOKED diffeent, it works fine for him and that is just the way God made him..like having freckles or brown hair. My kids could really relate to the Nemo analogy! My nephew plays here a lot and other kids have asked "what's wrong with his hand?" and I just tell them, "that is the way he was born and he likes to play just like you do!"

Thank you for that answer. Now I can answer the question without a problem most of the time. In the beginning I was very emotional so sometimes I would cry after I walked away. Sometimes I think it is more how the person asks the question or reacts to my answer that makes it easy or hard. But the Nemo story is a good one to use with kids, thank you so much.

Hi Dori...I'm so happy you wrote. I did know about Davids hand before he was born. They saw it in my sonogram. The doctors first words were "if your going to terminate". I was so angry I never went back to her. I am glad now that I knew before bacause, as you know, it would have been quite a shock. I find that young kids stare at it and I just quietly say do you have any questions about Davids hand and they usually ask what happenend. Adults usually don't stare. I haven't come across any rude adults...yet The Nemo analogy is a good one. I usually say this is the way God made him. We go to Schnieders Childrens hospital here on Long Island. The theory behind Polands syndrome is the same...restricted blood flow. He is also missing the pectoral muscle on the right side. Joey will be able to do everything...and you'll be so proud

Dori--I did not get to see the episode, but my brother-in-law did. I am expecting my son in August and a recent ultrasound showed and abnormality in his left hand. We are headed to do a more extensive ultrasound this week. It sounds to be very much what your son Joey has. I just wanted to tell you that it is very comforting to know that there are other families out there that are dealing with the same thing and that my son can overcome this. Thanks for your inspiration!!

I wish you all the luck and happiness when your baby boy arrives in August. He will be just fine. I would love to talk to you if you need any information or support before or after his birth. I don't know how to use this website to send your personal email info without it posting on the site. If you know how, contact me somehow through the site.

Our episode airs again on May 2 at 9:30am if you want to watch it.

I would really like to keep in touch with both of you. It really does help to have someone who knows what you're going thru. I think we have to list each other on buddy list. I think you click on the name (Dori1) etc...but I'm not sure.If you find out please let me know.
Thanks
I am going to tell my Mom & sister to watch on May 2

I added the both of you to my buddie list earlier did you receive a notice? I think you have to look under your profile information. What states do both of you live in? I am from New York - 45 minutes North of NYC.

Hi..I added both of you to my buddy list also. When you click on the names tho it says I do not have permission to view the info. My husband said I should just put my e-mail on this message but I don't know if thats allowed.
I wanted to wish kreimeyer6 all the best with the next sonogram. I remember going for my follow-up sonograms being so nervous. Hang in there and know that I will be praying for you and your family. Keep us updated

I would like to thank both of you for your support. This is my 4th baby and the first to show any problems. It has been a little stress full waiting to find some answers. I will keep you both updated with any of the information I recieve on Wednesday. I have also added both of you to my buddy list.

I am going to put my email on here if you want to contact me

dorigilbert13@yahoo.com

Here is my email also kreimeyer6@q.com.

O.k. Here's mine barbj96@optonline.net