Moms of hearing impaired kiddos long

Gracie&BerniesSAHM · August 2008

Just wondering if there are any other moms out there with little ones that have hearing problems.
My daughter is almost 7 (too bad this board wasn't around when she was a baby!) Anyway, she has asymetrical (sp) hearing loss...which is pretty uncommon I guess. She is deaf in her right ear but has only a mild high frequency hearing loss in her left ear. So basically she can only wear an aid in the left ear. The frustrating part is that they could correct her hearing in the right ear with a cochlear implant but b/c her left ear isn't as bad they won't do it. Bleh. Anyway, she has speech issues and luckily through school gets great speech therapy. She does go to a regular public school and wears an FM tuner so it helps amplify the teachers voice over the other kids. But she said something the other day that just broke my heart, she told me that sometimes kids don't want to talk to her because they can't understand her. I can't imagine being in her shoes, and some days I just don't know how to help her cope with being different.
So are there any other moms out there that are struggling with similar issues?

amajane · August 2008

My DD has a mild hearing loss in her right ear and moderate hearing loss in her left ear. She wears hearing aids in both ears. The audiologist says that she can hear but needs the aids for language development- that without aids she will have a hard time understanding what people are saying and pronouncing words. I'm so sorry your daughter is struggling. We are far off from school but I worry that my DD will have the same issues. We are fortunate that her hearing loss was caught early (it's part of a larger genetic syndrome) but I still worry about how she will adjust to being in school and making friends. When was your daughter's hearing loss diagnosed? I'm sorry I can't give you much advice but I just wanted to let you know you're not alone.

Gracie&BerniesSAHM · August 2008

She was diagnosed at 2 1/2 y/o...she had several ear infections from about 6 months to her 2nd birthday, and they kept telling me that they were responsible for her hearing loss and speech issues...well we had tubes put in, and then we did a sedated ABR test because I didn't believe that her hearing got any better after the surgery. And I was right!

Your daughter is a doll!! Is her condition metabolic?

amajane · August 2008

Yes, Marley's condition is metabolic, how did you guess? It's called DOOR which is an acronym to describe her syndrome- hearing impairment, disfigured toes and fingers, disfigured toenails and fingernails and mental retardation. It's a very rare syndrome- only 35 cases diagnosed worldwide and at this point no gene has been identified though our geneticist believes her syndrome is autosomal recessive- passed on by me and my husband. We have a 25% chance of having another baby with the same syndrome. Unfortunately that means we probably won't be having anymore biological children. Anyway, are you able to connect where you live with other mothers of hearing impaired children?

Gracie&BerniesSAHM · August 2008

I guessed on the metabolic part, a lot of times childhood diseases/syndromes that have multiple symptoms seem to be metabolic.
Our daughters hearing loss is a genetic thing too! It is also autosomal recessive (there are no other cases of hearing loss in either family) It just stinks to think of all the people I chose to love in this world we'd both share a weird recessive trait that would only be brought out when we had kids!
We are very lucky though, our middle child has perfect hearing and of course when this one is born early Nov. we'll have him tested. We wrestled with not having anymore bio kids b/c of the chance of passing on the hearing loss but we decided that it was worth the risk. I mean I can't imagaine to be in my daughter's shoes, you know not being able to hear well but we are very fortunate that she doesn't have a more serious disability.

If I was in your situation, I'm not sure what I would do either. It is so hard to see your kids suffer and then thinking about the possibility that you could have another child that would suffer in the same way is unbearable. And I know this is going to come off a little selfish, but sometimes you have to think of yourself and your relationship with your husband and your daughter. If you were to have another child with SN what kind of strain would it put on the family. I'd be lying if I said that I never thought about that...I dont like admitting it though

so tell me more about your little one!!

amajane · August 2008

I totally get what you're saying. In Marley's case, her syndrome is mild. But like most metabolic syndromes it's also progressive- which means that her condition will worsen as she gets older. Some babies born with her syndrome are so severe that they don't even have the sucking reflex. Seizures are common with her syndrome and babies who do have seizures usually end of dying- treatment is almost non-existent. Marley has never had a seizure (that I know of) though I worry about that every single day. If we were to have another biological child and he or she has DOOR, it may be more severe than Marley's condition. I too can't believe that I fell in love with a man who carries the same gene mutation as me. I had no way to prepare for this. Everyone in my family is so healthy- no birth defects, no misscarriages. It really makes me so angry. I planned my pregnancy so carefully (I'm a fertility nurse, ironic, huh?) and poor Marley has to live with this condition. I am angry, feel guilty but most of all- even after almost 6 months after her diagnosis- I am so bitter. On the other side, Marley is relatively healthy. No heart or kidney problems. She's never even had a cold. She's tiny- 12 lbs at 6 months old. But she is a feisty, alert baby. Tell me about your daughter!

Gracie&BerniesSAHM · August 2008

I'm glad to hear that her case is mild! And I totally feel you on the bitterness, guilt, etc. I am lucky that I won't have to experience some of the things you will but I still have the same feelings! I think a lot of it is because we plan things, we don't expect our children to have problems, ya know sometimes I feel horrible about this but I think about how some of those moms that are on welfare and have 7 or 8 kids and they are perfectly healthy, why did my child have to have a defect???

Then I try and remember that God gave her to me and my husband for a reason. He believes that we are going to be the best parents for her and I know that it's true!

My daughter that has the hearing loss is Gracie, she's in the first grade and I swear will be the next Picasso! She is the most talented artist, she is doing things that 5th and 6th graders do....which is weird b/c my hubby and I are horrible at art!! Anyway...our middle is Bernie (Bernadette) and she is a chunky monkey! She'll be 2 on 11-29 and super smart! Then I'm due on 11-7 with #3 and finally a boy!! My dh is stoked! Here is my facebook website it has pics of the kiddos!

https://www.new.facebook.com/photo.php?pid=824109&id=520223040

I don't think you have to be a member or anything! let me know if you can't view them!!
So how long have you been a nurse? And what does your DH do?

amajane · August 2008

Darn, I'm not a member of facebook so I can't see your pics. I'm kind of a computer moron- I had to get my DH to help me post a pic of Marley. Maybe you could post some pics in your siggie or something (am I saying that right?) Anyway, my Dh is finishing up is BS in Computer Science. He graduates in December. I have been a nurse since 2004. I am no longer working full time but still per diem. I'm just not ready to go back to work. And with Marley's needs I worry about being able to find someone who can handle her differences. Mostly, I worry that her hearing aids will be lost. They were SO expensive! Are you a full time mom? I commend and congratulate you for having #3. Marley had the WORST colic for the first 4 months. That on top of dealing with her diagnosis almost sent me over the edge a few times. I can't even begin to imagine having another newborn. I also am scared of being pregnant again. Everything was so blissfully perfect until my 18 week fetal survey when we found out about some potential problems. I had an amnio that was perfect but as I now know, that doesn't mean that everything is going to be okay. That's so great about your daughter's artistic abilities. What a great way for her to express herself. I sometimes wonder what, if anything, Marley's talents will be. At the moment, she is a babbling fool. She loves to "talk". Huh? Maybe she'll be a motivational speaker, right? If you'd like to email me directly I can be reached at ama_jane@hotmail.com. If you write I'll send you some more pics of Marley.

TexasLadyBug · August 2008

I am really late on this post and I hope someone reads this. I was born deaf in my right ear with hearing loss in my left. I am 24 now and the year I went into college I found out that in Texas (were I live) pays in full for hearing impaired persons college education. I met another girl my senior year at my university with worse hearing loss then I and she had no idea the program was around and had been paying for college for four years. I only know about the Texas law on this, but I would encourage you to look into your own states information to see if your little one can get this benefit as well. FYI my undergrad was at a four year university and my Masters were fully paid for. Good Luck!!! Ps.. The Texas info site is www.dars.state.tx.us/

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