Roman's Letter

Hello Family,

I just wanted to take this opportunity to wish you all a healthy and happy holiday season. Our family Christmas party is soon approaching and can’t wait to eat and spend time with you all. I like how we were able to celebrate a week earlier than usual. It was hard trying to split time between two families, so by doing it this way…we can spend the whole evening with you without having to worry about leaving for the next party. This will be Lila’s first Christmas and I hope we can keep the tradition going for the years to come.

Lila actually is the reason why I am emailing you all. Since birth, we came to find that Lila has a hearing problem. Hospitals today perform newborn hearing screenings on babies as one of there tests prior to releasing them to go home. Lila failed this test and failed it again before we were discharged. The doctor said that it was common for babies to fail this test because sometimes fluid may still be in the ear, which would eventually clear up, but that was not the case for Lila. To look into this further, Lila was referred to see an audiologist to check up and see if anything was wrong with her hearing.

Since birth, we have taken Lila to the audiologist to test her hearing several times. With months and months of testing, the results came back with Lila having a Mild-Moderate Sensinueral Hearing Loss. What this means is that (according to these tests) Lila has trouble hearing certain pitches in sound. For example….in her case, in a typical conversation between 2 people, she probably wouldn’t be able to pick up on S sounds of certain words. Because of that, her pronunciation of certain words will not be right because she’s not hearing those words right. She may have trouble hearing other sounds, but that’s the severity of her loss. The audiologist suggested that Lila be fitted to wear hearing aids on both ears to resolve this issue, both of which will be worn for the rest of her life.

Her loss is permanent (no, not permanent as in deaf, but permanent in that this loss cannot be cured and will be with her for her entire life). Although Lila’s loss is permanent, her loss is very mild. As we watched and raised her for the past 8 months, you wouldn’t be able to tell that anything is wrong. Lila turns when her name is called, gets startled at the sound of something falling on the floor, loves music and the sounds of guitar strings, etc. Everything seems to be normal, but the audiologist says otherwise. To further test Lila’s hearing problem, her audiologist referred us to see a Ear/Nose/Throat specialist at Stanford’s Lucile Packard Childrens Hospital (in which she saw 2 months ago). There, 2 tests were performed: 1) a blood test to check for any genetic causes and 2) a CT scan to check is there are any abnormalities in the structure of her ears. After 6 long weeks of waiting, we finally got the results which both came back negative. The results of her genetic test said that her hearing loss will NOT get worse over time. I asked if there was a possibility of this happening again if we were to have another child and was said that the chance would not be any greater than 25% if it were to happen again. As far as her CT scan, her ears came out perfectly fine. No abnormalities were found. However, no cause was found, which is common. Since everything came out negative, we were clear to go and not required to do anymore testing with Lucile Packard anymore.

A few weeks ago, Lila had two more tests again…the first was another hearing test just to see how it was again and an eye test to see if her hearing loss had any effect with her eyes (just a precautionary test). Her hearing remained the same as before, while her eyes tested perfectly…so there was no need to see an eye doctor any further.

For the past 8 months, this is what Lila has been through. As for Rizzi and I, it has been hard, stressful, frustrating, and scary. Dealing with this has really taken its toll on us, but as the months gone by and the results came in…we’ve become stronger and more accepting to what we are faced to deal with. I mean, I hate to compare, but comparing Lila’s mild hearing loss to the other sad and unfortunate conditions that some other kids have….it’s really not that bad. Lila can at least hear and is not deaf…she’s happy and healthy…and with the use of hearing aids, she’ll be able to live the normal life we want for her…that’s all we could ask for.

Lila will start wearing her hearing aids today (12/15/09). It’ll most likely be a tough day for us, but we just have to remember that those things will help Lila live the normal life we want for her…they will make her hear the beautiful sounds in this world. It’ll take some adjusting and getting used to seeing, but we’ll survive. The way I see this and the way I hope people look at this is that someone with hearing aid is just like someone who wears glasses. Although hearing aids aren’t as common as those who wear eyeglasses…the concept is the same in that they both assist with their respective senses. I just hope people see it that way and not think that she is ‘different’. As her parents, we need to be strong for Lila and not show her that we’re sad about this. If we let her see that, imagine what that would do to her self-esteem. So please, don’t feel sorry for her…she got a little loss, but she’s just as normal as all of us and I pray that she grows up with nothing but success in life.

So this is the reason why I decided to email you all. Rather than get bombarded with the same questions over and over at the Christmas party, I figured that this email would answer all your questions. Plus it’ll keep me from having to re-tell this story over and over and over. We’ve been slowly telling people about this, which has been a big step in our acceptance. I know with all your support that we’ll be fine.

Anyway, thank you for taking the time to read this. We’ll see you all on the 19th and if we miss you, have a safe and Happy Holiday.

Thanks,
Ro and Rizzi