LatherRinseRepeat--Yeah right

Ramblings of an over-worked, over-tired SAHM

Thursday, August 10, 2006

Back to work

Guess who got a job??? C'mon guess. OK, I suppose that was just a little too easy. Yes, that's right, I got a job and will soon be rejoining the working world, part time anyway. (Stay with me for this next part, you'll understand why it's important after I explain this).
I haven't shared this here yet, but my daughter, N., and I were both born with a cleft palate. Some of you may know what that is or you may be more familiar with a cleft lip (think Cheech Marin and Stacy Keach). Most people when I say "cleft palate" think of cleft lip and look at me and my daughter and say "well, you can't tell by looking, must have been a great repair". Umm, you can't tell by looking because the lip wasn't involved and it was on the inside so to speak. Here's a diagram to show you what exactly a cleft palate (specifically a cleft of the soft palate) looks like:

My daughter had her cleft repaired just before she turned 8 months and is doing great. My repair, 30+ years ago, wasn't done until I was almost 2, but I don't remember it and my speech is perfect despite the cleft.
The reason I'm explaining all this is because my new job is working with the local craniofacial/cleft team. I will be working as a craniofacial family advocate. I will meet with parents and kids when they come in for their annual team visits. The team concept to care with clefts is important because the cleft can affect so many things, such as feeding, hearing, speech, teeth, respiratory, etc. So with these team visits, the kids can see all the specialists at one time and the dr's then get together to come up with an individualized treatment plan for each child. This saves the parents from running back and forth to all kinds of doctors and trying to figure things out when the doctors say different things.
My job, which is a new position with this team so I'll be kinda figuring it out as I go along, involves, ummm, well I'm not exactly sure all it involves. LOL. But part of why I'll be there is to help bring more of a family-centered focus to the team and to be somewhat of a bridge between the parents and doctors, since some doctors have a tendency to talk down to patients.
The thing about this job I'm most excited about it newborn outreach and nurse education. Unfortunately, I know firsthand that occasionally babies born with clefts slip through the cracks in the system. When N. was born, the cleft was discovered in the delivery room. However, NO ONE, not one nurse, not one doctor, not one lactation consultant, NO ONE told me there was a craniofacial team RIGHT THERE AT THE HOSPITAL WHERE I DELIVERED HER. We were supposed to get a feeding consultation because they KNEW she couldn't suck before we left the hospital. That never happened. We were sent home with a breast pump and regular bottles. (It wasn't until much later that I learned that there are special bottles and nipples available). I tried to get the feeding consultation scheduled the day after we left the hospital as an outpatient. I'll spare you the gory details on that phone call and just say I hung up the phone almost an hour later in tears because I couldn't get anyone to help me. It's a bit of a sad story with a happy ending, because we eventually just improvised and figured it out and she's a very healthy, happy 3 year old now.
However, that experience (plus the horrible care we ended up getting from the next nearest team 30 miles away), made me determined to find a way to ensure that other parents and babies do not have to endure the kind of heartache, desperation, and lack of information that we did. I had been talking to the team coordinator for a while now about how I could help and she suggested that this position, which had been in the works for over 6 months, would be the perfect way to do it.
So, a big part of my job will include making sure that every nurse, every doctor, and every lactation consultant that comes in contact with a newborn with any kind of cleft or craniofacial abnormality, immediately contacts the craniofacial team and also tells the parent about the team so that no other child EVER slips through the cracks again. I can't wait to get started. To me, it is so much more than just a paycheck, althought the paycheck will be nice too. ;-)
Oh well, I'd better get working on finding child care.


  • At 8:07 AM, Blogger Marni said…

    Good for you! You will definitely help ease the fears of new parents that suddenly find out something is *wrong* with their child. Let us know how things are going!

  • At 10:14 AM, Blogger Liz Miller said…

    Hooray for getting a job that is both meaningful to you and helpful to others.


Post a Comment

<< Home


Free Site Counter