i am being unable to make decision for my 7 year old daughter. every time i come up with something different. so i need some advice from you all, although i just need i guess to see if you have another perspective.
little background.
my daughter (twin) has a moderate-severe hearing loss in one ear. it's not irreversible, since it is due to one of her three hearing bones in middle ear had deteriorated due to ear infections. she had a surgery when she was 5, during which they put a titanium implant to replace her missing bone. the surgery is over 3 hours, recovery period 8 months (to be on the safe side). during recovery she has to be careful when sneezing, coughing to do with open mouth. no swimming, no traveling by airplane, no jumping, no rash movements etc. i mean anything that can make the implant move from its position. no going to school for 1 month.
after the first surgery, and the recovery period, which, at age 5 she did fantastic. we were lucky because she didn't get sick, and her twin didn't get sick, while all along was very difficult on her an her sister because we didn't have help so she and i pretty much stayed indoors for 2 months.
after two months her hearing was completely back. i wish i could describe what hearing that news felt for us. like, no, i have no words.
3 months later she got an ear infection, her eardrum collapsed due to (what we found out later on) her eustachian tube not functioning properly hence causing negative pressure on the ear. so eardrum collapsed and moved the titanium implant and her hearing started decreasing to now which is at moderate severe hearing loss.
she is in second grade and without a hearing aid she is still a star students. scores highest in class, is very outgoing happy child.
when the surgery failed the first time her surgeon said she will not repeat the surgery until she is a teenager because there is a small chance her eustachian tube will mature and move to becoming in vertical position, meaning function and drain properly. we were ok with that. we still see the specialist every 3 months. well, last summer (a year after surgery) she said she wants to do it again in spring of 2012. which is almost here. we are scheduled for a may surgery. at first we were on board but now we are having second thoughts. we don't think the surgery will have a different outcome because nothing has changed medically for my daughter to assume otherwise. my daughter says she doesn't want the surgery but wants hearing aid but when we ask her why she said because she won't be able to take swim lessons, go to pools etc basically not having a 'normal' summer. that has gotten us thinking are we making the right decision. what if we do it, and has the same outcome, and we will have to do the surgery again after a few years when our chances for success will be higher. so we are seeing the specialist in 10 days and we will discuss our concerns but i would like to hear what would you moms do? would you struggle like we are? or would you just do it? i have no problem with not having a summer, my other twin won't be stuck at home because i have lots of moms from their school committing to having my daughter join their outings during this summer so she doesn't feel punished by this surgery. while my other twin will have fun i will make as much fun as i can with my daughter and help her recover. we will draw a lot, take walks, do projects etc all mild things without risking anything. my concern is how much more scarring inside her ear are we going to cause for her surgery, what if we have to do it again when her inner ear structures changes etc. or maybe you can't see why i am struggling with this?
please read carefully and tell me what you think. like am i missing something? am i wrong to have doubts? what would you do?
ultimately we will ask the specialist to make an educated decision but help me out now please.
thanks
L.
Not wrong to have doubts, not at all!! This is what mothers do, carefully weigh all possibilities. You are just being a mom.
Now, if it were me. I would listen to my gut, and my daughter. I would get the hearing aid and wait until she is older. No question, I believe that's what I would do.
Well, since she has already said she'd prefer a hearing aid over the surgery at this time, why not go that route? Leave the door open for the surgery in her mid teenage years. Meanwhile, she'll have her aid, and perhaps by THEN changes/advancements will have been made to give the surgery a better chance of success.
Mom knows best, and you said yourself 'you don't think the surgery will have a different outcome' then last time, right?
Least, that's how I see it.
:)
Hi L.-
I have a child with profound medical issues...
I wish I had a magic answer...but my best advice is...'go with your gut'.
My 'momma gut' has been a profound resource...even when many doctors (world renowned) could not 'agree'.
I wish you peace with your decision...
Sending healing thoughts...
Michele/Cat
Okay, I can see why you would struggle. If you wait a few more years, does that make it a lesser chance of the surgery working? She can wear the hearing aid now and function okay? Ask the specialists about the scarring issues and such, for possible repeat surgeries as she gets older... and especially why they changed their recommendation of waiting.
If she can wait some more years and still be fine, then I would say wait. If waiting would hinder her ability to have a positive outcome in the future, then I wouldn't wait... But from what you say, I would likely go the hearing aid route for now. I wouldn't use the summer fun as a decision factor.
I would do a lot of prayer and research on this.
I would get the hearing aid, begin to learn sign language as an additional form of communication and plan on performing the surgery when she is older and can be part of the decision. She has already said she does not want the surgery, I get that she is 7 but really do you want to violate her own wishes on this? If you gave her a say in all of this you should take it heavily into consideration.
If it was my decision I think I would get a second opinion just to see why this has changed from waiting to now and see what another good doctor would say and then go from there. At least get another medical opinion to help you weigh this hard decision. Then go from there and it seems to me either way you go it isn't something that is life or death if you make the 'wrong' decision.
Hmm that's hard..why is the doctor recommending you do the surgery now instead of waiting for the teenage years per her original recommendation? will the surgery be more effective if she has it done as a teen? if she gets it done now, is there a chance she'll STILL have to get another one as a teen since her ears will change?
sorry i have more questions than an answer!
My first question to the specialist would be "what changed?" Why was there the initial recommendation of waiting until she was a teen and then now it's this year. What was the basis of changing the recommendation. Then make the decision from there.
I know your situation is complicated. You have to consider the best overall outcome for her future with this decision.
When I'm trying to make a decision, I often ask myself "if I had to decide in 10 seconds, what's the choice?"
Sometimes as parents we have to make unpopular decisions. This is one of those. I understand why she doesn't want the surgery; however, you are the parent and you understand the long term ramifications not just the "I want a normal summer". I would talk to the specialist again and ask your questions. Why now and not later when she is older? What has changed? That is the big question I would want to know.
In the long run, if the doctor is able to explain why she feels now is better than later I would tell my daughter that while I understand her feelings this what is in her best interest and we are doing it. I'm the parent, I make the decisions especially when they are health related.
I would hate this for sure. I realize that this would be difficult for her, but I would really consider just doing it over the summer. It sucks not to have a summer. However, having this hearing disability could hinder her in school. How horrible would it be to have to ask someone to repeat things ALL of the time. It will be a lot easier when she is young than to try to do it when she is a teenager and is involved in more school activities.
You are NOT wrong to have doubts!!! our oldest son also has a moderately/severe hearing loss in his right ear. His is due to his eustachian tube being tiny, they have tried 4 times to get a tube in there and they cannot. He will be 3 years old next month, he just got a hearing aid on monday. I would have all the same concerns that you have. I would also worry about doing this surgery now when there are such concerns to have to do it again in a few years. I would voice all of your concerns with the specialist. make a list of all the pro's and con's you can think of, and ask the specialist to do the same. we had to have our oldest's tonsils out back in October, and his ENT went over all of the risks, pro's and con's of the surgery and gave us lots of information. she wanted to make sure we were making the right decision for our son. I totally understand your wanting the surgery but not wanting it all at the same time. and, KUDO'S to your daughter for not having any kind of issues or insecurities with her hearing aid!!!!! You are being a great mom, and I think once you talk with the doctor you will feel better. do your research as well. Good luck!
Dear L.,
First let me say what a loving and caring mother you are.
From a child's point of view I can understand your little one wanting to do the same things the other children get to do. From a parent's point of view I would want to go forward with what the specialist recommends to repair and improve your little girl's hearing. She may not understand now, but will appreciate the important decisions you made for her in future.
Maybe you could give her some swimming lessions before the surgery? If not, the special things you have planned for her during recovery sound wonderful.
By the way, she sounds like a great kid and I'm sure her sister is too. Are they identical twins?
Blessings....
Wow. You sound like a fantastic, amazing mom. I have a world of respect for you.
The only real advice I'd have is to seek a second opinion -- and if possible a third, fourth, and fifth opinion -- from other surgeons. It sounds like a pain, with all the visits, but I also get the impression that your one surgeon isn't giving you quite enough medical information to go on. If a preponderance of doctors advise one course or the other, that might make your decision-making process a lot easier.
Best wishes,
Mira
