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Has anyone's child had a Pollicization procedure?
So, yesterday we found out that my son Zane's thumb can't be saved. I feel so many things right now and I need to talk to people who understand, in some way. First, I feel relief that we're finally reaching a course of action for his thumbs. (his left thumb CAN be saved, but will most likely suffer some weakness). April 11 we are meeting with the surgeon who will give us the final okay on this and be doing the procedure. He is well known with this procedure, which makes me very grateful.
Second, I feel like something I did during my pregnancy caused this. He's seen the geneticist and they have ruled out any genetic problems, so the only thing I can possibly think of is that it's a complication of my high blood sugars when I got pregnant, and my diabetes throughout my pregnancy. I have so much guilt over it, I can't even begin to describe it.
Third, I feel sadness...My son will now forever be different. He will have to learn coping techniques to deal with people who will be so mean to him. He will have to learn to do things differently. Things like typing even. We take so many things for granted in life. He won't be able to play all the instruments in band, or play piano. He won't be able to do a lot of sports. He will struggle with things like opening jars and bottles. Life will be harder for him...and it makes me so very sad.
Fourth, I feel frustration. This is rare. Very rare from what I can tell. It's so rare that there's no real support group I can turn to. It's not cancer or down's (horrible things, yes, but more common). And...well...I really wish I had some support. My husband doesn't look past tomorrow usually. He doesn't do much research on this, he doesn't realize what it will mean for our son. He doesn't really seem to care a lot of times...it doesn't seem to bother him. But it bothers me...it makes me hurt inside. And...well, I really wish I had some support. Either someone who has already gone through it, or someone who is going through it right now...So, if you are out there, if you could help be my support...I would really, really appreciate it.
Thank you.
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Re: Has anyone's child had a Pollicization procedure?
Right now I am in the process of yet another round of the waiting game (the surgeon is on vacation...I've noticed a COMMON trend among surgeons! I'm amazed they ever work!). His appointment with the surgeon who would perform this isn't until April 11, but yes, I fully intend on giving him my contact information and asking if he would be so kind as to pass it along to some other parents who have gone through this process. Hopefully they will be willing to talk to me and perhaps we could be support for each other!
I think right now, it's just such a daunting thing...I think once it's done, and he's in therapies and is using his new "thumb" it will be a lot easier on me, that I won't think about it as much because it will be what it is and he will learn to adapt. But, right now...it feels like such a horrible thing. I just can't keep waiting all the damn time! Don't they realize they drive us mad?? It's like we're stuck in some psych experiment gone wrong.
Hi Cathy,
My son will be having this surgery on his right hand in about 6 weeks. He will be 10 months old at the time. He has a normal thumb on his left hand but a "floating thumb" on the right - we met with 2 surgeons (who are also very well known in the field) and both said that there was nothing to be done with the thumb except pollicization. That made us feel better that we got the same opinion from both.
I can relate to you in so many ways. C was born on a Friday night and of course none of the specialists were at the hospital all weekend so all I could do for 3 days was imagine what his life would be like with a dangling thumb or none at all. I'm a teacher so I just kept picturing kids being mean to him, etc. and it broke my heart. Once we met with the surgeons, I felt a little better - they assured us that he has a great index finger which is important for the surgery to be successful and both doctors repeatedly said, "people don't count fingers." I'm thinking that his difference will be much less noticeable than I first imagined.
As for the guilt, I can relate too. This wasn't a planned pregnancy so I of course began questioning if not being on prenatals, etc caused this (he also has several other birth defects too). The geneticist and other docs have said it's not likely anyting I did so I'm TRYING to get over it - some days more successfully than others.
I too have thought about things like playing instruments, typing, gloves, etc. I really do think I'm going to be amazed by how much he can do - he'll never know any differently so I think he'll just adapt and do it with 3 fingers. I'm already amazed by how he compensates for his dangling thumb right now!
As for support groups, I haven't found anything specific to his thumb but have found an online network for his group of birht defects (VACTERL association). I'd love to keep in touch here (or on private message) because I know it's difficult to feel like no one else in the world is going through this. I think it's a great idea to ask your surgeon too.
Anyway, this is a lot longer than I intended - but it's nice to know there's someone out there who can relate.
My son is about to have pollicization. I have talked to several families whose children had the surgery and they are very happy with the results. My son is 2 years old and has missing thumbs. We are looking to have the pollicization done this year on at least one hand. Due to my son's medical conditions, we see lots of doctors and every one of them said they would have it done if it was their child. We have seen two surgeons and will be following up next week with them. My son is doing well currently, so we need to do the surgery soon due to his medical complexity.
I know about what you are going through. My son was also born without ears and has kidney, heart, lung, urological and feeding problems. He has fanconi anemia which is a very rare disease in which we just found out about. He will probably face bone marrow failure and need transplants. Even though our situations are unique, I share the frustration you are feeling. Any time a child is born with differences, it takes time to absorb the shock and deal with the emotions it brings. My husband handles my son's condition totally opposite of me. I do research, read everything I can, call doctors, and think about the future of my son's health. My husband watches TV, works out and goes on with life. He just doesn't want to talk about it or face the future. Each person handles this in their own way. You will grieve the "picture" of what you thought your child's life would be like with normal thumbs. It is natural and it will happen no matter if you are dealing with thumbs or anything else. Give yourself time to feel this and you will "accept" it in time.
There are parents who make the choice not to have the surgery because their children learn to adapt. My hubby is more on that side of this issue. My son has adapted very well so far. He writes, picks up small and large objects, types, plays on the piano and he doesn't know that he can't do anything. He has built up amazing strength in the forefinger and uses it as a thumb. He is in occupational therapy to help him get ready for the surgery. I am leaning toward the surgery due to his use of sign language. It is hard to tell some of the signs.
The unknown of what caused my son's concerns was the hardest part of it as it took almost 2 years for us to find the diagnosis. I remember wondering if I had done something wrong during my pregnancy, too. It turns out that I didn't do anything wrong. We both carried a recessive gene that is very rare and passed it to my son. Not really our fault, as everyone has recessive genes. We are just glad to have him.
I hope I gave you some support. Take Care.