Connexin 26 News

A fascinating new research article has been published for all of us Connexin 26 families regarding progression of hearing loss with the Connexin 26 gene. You can read a great synopsis at the CI Circle News Blog.

Mixed Feelings

I just received a phone call today that I have been anxiously awaiting.

The geneticist called to let us know that Liliana did not inherit either of our mutated Connexin 26 genes. She is not a carrier, and should not have a hearing loss associated with Connexin 26.

Phew.

While I am so happy for Lily, I can't help but have mixed emotions. My heart hurts a bit more for Christian. One of my biggest fears is Christian feeling left-out, different, or alone. Sure, he has a big personality to match is big brown eyes and big beautiful smile. I know I don't have much to worry about him when it comes to social skills. I just wish I could look ahead to the future to make sure that he never feels like he doesn't fit in our family.

We do everything we can to celebrate his magic ears, and we are so fortunate that our friends and family do as well. Cochlear Implants are becoming more mainstream (hopefully there will be a day when randoms don't ask me about that "THING" on my kid's head), and Christian attends school with mostly hearing children who are used to being in class with a child who wears a CI. Our friends in our neighborhood have educated their children that Christian plays with about his CI. I know that there will be times in his life where he does feel a bit different. I just am not ready to deal with that yet.

What's In a Name?

Here we are, 22 days before I'm scheduled to go in and have our little girl, and we STILL haven't finalized a name. Our friends and family know that last time with Christian, we announced his name well before he was born. In fact, we knew his name pretty much from the moment that we knew he was a boy. This time, it's a totally different story.

In addition to worrying about the typical stuff a parent thinks of when trying to name your child (like "Will she get teased"), I'm also thinking of something else:

Will she be able to hear it?

We decided to not get the pre-natal testing done to determine if our daughter has a hearing loss. For us, it was too invasive of a test for something that we really couldn't do anything about until she was born. With our family's genetics, we have a 25% chance of any future children also being Deaf. And, in all honesty, having a child with hearing loss is all we know. It's not AS scary as it was in the beginning. I wish I could say that it's not scary at all, but I would be lying. Even with all of Christian's amazing progress, I still have moments everyday filled with fear and anxiety. The fear and anxiety is normal for us.

So, instead of just trying to figure out what sounds nice with our last name, I'm also trying to find something that a child with a potential profound hearing loss (with high frequency issues) could hear. I've pretty much ruled things out that start with a soft consonant.

I know some people reading this may think that I'm a bit nuts, or I'm over-thinking this. Maybe I am. This pregnancy, I haven't obsessed over the color of my baby's nursery, or even my "birth-plan". Any time that I have had to think about this pregnancy (which has been like 5 minutes every other day), I've used to come up with our game-plan. We have our doctors in place. We know what to do if we do have a failed hearing test at the hospital. Our genetic testing blood draw is finalized. We've even talked about how our life is going to change if she DOESN'T have a hearing loss (no more vacuuming outside of the nursery door at night and large gatherings at our house when the baby is sleeping). I feel ready. I feel able. Even if the hospital bag is yet to be packed and the new crib isn't put together. I know whatever name we chose, will be perfect for her

Connexin 26 and other Genetic Cause Families Come In!

Ok, so now that I'm 6.5 months pregnant, it's about time I actually start thinking of preparing for this baby.

I feel very fortunate that we actually know the cause of Christian's hearing loss, as I know there are many families out there that never get to pinpoint the exact cause. Since we know, in addition to immediately requesting an ABR, we definitely plan on doing genetic testing on our next child. I'm interested to see what families have done when they were faced with a similar situation as we are. We have several options regarding the genetic testing, including collecting a sample from our child's cord blood (which we will be banking again this time around).

If you have any insight on this, please share!

Are You Going To Find Out?

When I was pregnant with Christian, when people asked me the question "Are you going to find out?", they were asking if we were going to find out the gender of our baby. The person asking usually had a huge smile on their face, with their hands clasped in anticipation.

Folks are still asking us this question with this pregnancy. Instead of a huge smile, it's a look of concern. And their hands are clasped not in anticipation, but almost in prayer. They're not asking if we're going to find out if we're having a boy or a girl. They're asking if we're going to find out if this baby is deaf as well.

This certainly doesn't hurt our feelings, or make us feel weird. It doesn't make me feel uncomfortable, or even upset. It's definitely a natural question, that I am always more than happy to answer it. I usually pat my belly, smile and gently say "No, it's not important to us".

This doesn't mean that we don't have a game plan already in place. We're going to have an ABR done immediately, genetic testing done from the baby's cord blood, and an appointment with our audiology team at Hopkins IMMEDIATELY following the birth. We're going to be armed with information, ready to deal with whatever comes our way, hearing or not. I've already chatted with our EI team, and plans are in the works should they need to be made. We're ready. We're prepared. Which God knows we weren't last time.

By the way, we do plan on finding out the gender of this baby...to us, that matters more :)