So Many Specialists!

I’ve mentioned in a previous post that we saw several specialists for Levi in the hospital, and we have seen several since our stay.  I thought I would go into a bit more detail about who has all been involved with the care of our son.

The specialist we saw the most during our stay in the hospital was the speech language pathologist that I talked about in my previous post.  She was so helpful, and awesome to work with.  She was upbeat and encouraging, and was essential to us learning how to properly feed Levi.  Since he cannot provide suction on his own, we were trained in using a special bottle called a Haberman feeder.  This is an amazing invention, and we were so glad that something like it exists for children with cleft palate! 

In case you’re having trouble picturing why Levi can’t provide suction, press your tongue to the roof of your mouth and make a sucking motion.  Now, imagine that the roof of your mouth has a space that is open all the way to your nasal cavity and any pressure that you are trying to form escapes through your nose.  It just doesn’t work, and that’s what Levi is dealing with right now.  It’s not painful for him, and he doesn’t know that anything is wrong; it’s just the way he is right now.  His cleft lip is actually quite minor and doesn’t affect his eating at all, but his cleft palate is what causes feeding to be a bit more of a challenge.

We also met with a geneticist at the hospital.  He asked about our family history, to investigate whether this was hereditary.  Both Ryan and I do have distant relatives that have cleft lip and/or palate, but none of them were closely enough related to affect Levi.  He also ran some blood work to determine if the cleft lip and palate were a part of a larger syndrome, but the tests all came back normal.  This was a definite praise item, as I had read that occasionally cleft lip and palate are found in combination with conditions like Down’s syndrome, etc.  Despite having these challenges to deal with, we are blessed that his cleft lip and palate are not as severe as they could be, and that he does not have other more serious conditions.

A few weeks after leaving the hospital we attended a Cleft Lip and Palate Clinic at RUH.  These clinics are held once a month at the hospital, and those who have been affected by cleft attend to be assessed by a multi-disciplinary team of specialists and to have their questions answered.  We were told to expect a fairly long day of appointments by a variety of different specialists.  Our first appointment in the morning was for Levi’s hearing test by an audiologist.  Often, cleft palate babies have fluid in their ears because of the space in the roof of their mouth.  Sure enough, Levi has fluid in his ears and will most likely be sent to have tubes put in.  They will hopefully be able to do this minor surgery at the same time as his cleft lip repair, so he can get both of these operations over at once.

After this first appointment, we sat in our assigned waiting room, where all of the specialists came to us.  It was nice not to have to pack up Levi every few minutes to move to different offices!  It was here that we spent the rest of the morning, being seen by a whole bunch of different people.  The cleft lip/palate coordinator came in to explain how the system works, and answered any questions we had.  Then we saw our feeding consultant again, who asked us how the bottle was working for Levi.  With her was a dietician, who ensured that Levi was gaining enough weight and eating the right amount.  Next was a pediatrician, who assessed Levi’s development at that time.  Following her came the plastic surgeon that will perform Levi’s lip and palate repair.  It was nice to finally meet her, as we had several questions for her.  Finally, Levi was seen by a pediatric dentist.  She explained that Levi probably will have problems with tooth development as he gets older, as his gums aren’t quite formed properly.  She mentioned that as his teeth come in, he will be sent to see an orthodontist.  Ryan and I both had braces, and we figured any of our kids would probably need them anyway… so this wasn’t a surprise to us! 

So many specialists in such a short amount of time!  It’s amazing to me that RUH has assembled such a wide array of people into a group specifically designed to help families dealing with cleft lip and palate. It’s been a bit overwhelming at times but we feel well taken care of, and know that whenever we have questions or concerns, there are people there to help us out.  Thanks for reading!