Friday, February 18, 2011

Finding a Doctor

For us here in Utah, where we must have poisoned water or something, clefts are a rather common occurrence. In fact, it is the most commonly diagnosed defect in babies, and that applies nationwide. Over all, clefts are just really common. But you would never know it thanks to everything we have available to correct them so early in life.

Okay, I have to stop here. I hate using words like “defect” or “correct” because it makes parents of children affected by a cleft, myself included, get a bit defensive. It’s hard to try and explain how my own emotions are so completely contradicting.

The fact of the matter is that my child did not develop completely correctly. That’s the cold, hard, truth. But somehow I look at him, before surgery, and though I desperately want to “fix” it both for appearance as well as functionality. I find myself feeling like my child is perfect just the way he came to us, with his heart-melting, EXTRA big smile, I absolutely love and adore him just the way he came. It’s a strange emotional battle with myself. On one hand we have these babies that, in a sense ARE perfect. They are ours, and they are absolutely perfect to us. They are just the way they should be…kind of. Maybe it’s just me, but it's such tricky emotion how I feel about this. I can barely explain how I feel to myself.

I guess the only way to sum it up is this. You will cry with such conflicted emotion the day your child has the surgery for the lip and nose repair. You will be astonished and relieved that he looks “normal,” and yet you will miss the perfect face you fell in love with.

I did, and I bet you do too.

So, please excuse my use of words such as “normal,” “correct”, or “defect”. They are indeed, absolutely accurate, and I know it. Yet somehow they don’t completely fit. If you are a mother or a father of a child with a cleft, I imagine you relate. I hope you do, because it’s comforting to feel like were all drinking the same purple punch.

Sooooooooo, back to finding a Doctor.

Though I imagine that it is pretty much a similar process in most locations in the US, the way it works for us cleft parents in Utah is this;

You are informed of the situation.

You are put in contact with a grief counselor.

Your grief counselor and/or the ultra sound tech will inform your personal OB, and the local children’s hospital of your families “situation.”

Your OB might call you to see if you’re “okay.”

Someone on the “cleft team” at the local children’s hospital will contact you and set up an appointment to meet.

At this appointment they will go over all the information you already learned online from your hours of research. You will smile politely and act like this is all new to you, and if you're lucky, some of it might be.

They will give you a list of local doctors who specialize in cleft repair from which to choose.

Ahhhhhhh….the list.

They will try to answer your questions.

You will be frustrated that no one really can.

No one can tell you how feeding will work. No one can tell you how many surgeries it will take. No one can tell you how severe the cleft will be. They will tell you all the things that may or may not happen.

You will be frustrated that you will just have to wait and see, and do a lot of trial and error.

The not having all the answers will drive you crazy if you let it. So you won’t. (refer to last post:)

You will then begin one of your first proactive activities. Yippee!

You will go home and you will research the list of doctors.

I read reviews of doctors from patients. I looked at websites and photos of their work. I checked to see how many cleft repairs they have done, and continue to do. Were they involved in any programs like Operation Smile, or Smile Train? That mattered to me. (Google these if you don’t know what they are.) Did they take my insurance? I researched each doctor's particular methods and timing for surgeries and recovery. Trust me, they all have a different ways of doing things. I even had a chance to talk to some of the nurses who work at the children’s hospital, and get their personal favs, and reasons for their preferences.

I narrowed it down to two doctors. I made appointments.

You have to meet the person who you and your family will be working with closely for the next decade or longer. You really do. You need to make sure that this doctor is the right choice for you, and your family. Meet at least a few doctors. You will know the surgeon that’s best for your little monkey.

I not only met a few potential Doctors, I fully interviewed them. Really. I even had a list of questions with me that I wanted to ask. I started it weeks before the first meeting and kept adding to it each time I would think of something I thought of something important. Then at my appointment I whipped out my list and went to town.

Meeting with Doctors will cost you most of the time. Find out when you set the appointment. Normally its the cost of a co-pay. So narrow your choices down to 2-3 then go in with your own list of questions. It’s soooo worth the money.

Ultimately, we went with Dr. Louis Morales. This is him, holding Ryker at our first Surgery at Primary Children’s hospital.

When we went in to meet with him for the first time, we waited in the lobby at the children’s hospital. Like I have said before, that waiting room is an incredibly humbling place. The waiting room serves about twenty doctors, so you have children affected in every way waiting to be seen or treated. We looked around and I suddenly felt guilty for the pity party I had been holding off and on in my head about our family’s situation. I realized how good we actually had it. I offered a prayer of pure gratitude right then and there. I was so grateful that my trials were my own.

There was a little boy running around in front of his Mom and his Grandma about ten feet in front of us. He was darling. About two years old, he was a little stud. I watched him play for about 15 minutes and I couldn’t help wondering why he was at the hospital. He was an active, healthy kid. I didn’t see any siblings, so he must be here for himself. When I asked my husband why he thought this little dude would be here, only then did we both see the tiny, barely noticeable scar on his lip. We had been watching him for twenty minutes and never even noticed! He once had a cleft. Then his mother called out to him “Ryker, stay over here.”

Yep, the little boys name was Ryker.

The same name we had just decided on for our own son a few days before. Creepy, right?! I almost lost it. Here was this little boy who was so happy, healthy, and so absolutely perfect. It gave me such hope for us, and our child’s future. I know in my heart that this was a small tender mercy from God. A tiny glimpse of what it could be for us. I beamed for a week from that little encounter. And when we finally went in to meet Doctor Morales, I was on my own personal high.

The following are some of the questions I asked the doctors we interviewed. I had done a lot of research at this point so I had very specific questions.

Do you take our insurance?

How do you bill?

What is your timeline for lip and palate repair surgeries and how flexible are those timeframes?

What are your specific methods of lip and nose repair?

What are your specific methods of palate repair?

Do you use any unique methods for surgery you find beneficial?

What are your recommended procedures for recovery?

Do you use No No’s, a Logan's Bow, binkies, etc. If so how long do you use/wear these?

How long will we be in the hospital with each surgery?

Do you do any special scar treatment?

Do you recommend ear tubes, and why? Will you allow another doctor too put them in at the same time as another surgery?

How often/how many do you perform these surgeries (per year)?

Do you offer any kind of service to Opp Smile or Smile Train, or the like?

Is there anything special to set you apart from other doctors?

Do you have pictures of before and afters?

I’m sure there are plenty other really good questions to ask, decide for yourself what you want to know. As important as getting your questions answered is, just feeling out your doctor is a major part of your decision. How do you like his bedside manner? Does he take the time to explain things to you? Do you see him being a good team member in your child’s cleft adventure? Bluntly, do you like him? Overall, how does your parent radar react?

Once we decided on our Doctor, it was such a relief. It felt so good to have taken one of the first, most important steps. Now we had a direction and confidence in the process because we had confidence in our doctor. One step down, 1,653,987 to go! Just kidding, but sometimes it does feels like that, and that’s okay, I guess.

Tuesday, February 15, 2011


Okay, time to get educated. Like I said before, one of the first things I did was to research as much as I could about cleft lips and palates, until I felt like I had a firm grasp on the topic. And good golly miss Molly, how the internet can be a double-edged sword. I found all the “in your face, no sugar coating it” type of stuff. Which was good and bad. I found pictures that would break your heart, and photos of repairs that would blow your mind. It was scary to learn about the most extreme cases not knowing if Ryker would be one of them. All the surgeries, procedures, and problems he MIGHT have. So I decided to follow some sound advice.

Prepare for the worst, and hope for the best.

Under promise, over deliver.

And, my personal favorite, Expect everything unexpected.

Meaning, just be prepared to go with it, whatever “it” may be. That was our only choice and I cannot tell you how much peace embracing this idea has brought us.

EVERY SINGLE ONE is different. Each child, each cleft, each Doctor treating each child, and every situation. All different. And just when you think you have a plan, and you have it all under control, it will change. But really, is that so different from parenthood in general, in life in general?

Do your research, absolutely do. But don’t go nuts! And remember to take everything with a grain of salt. No matter how much research you do, you still will serve yourself and your child best by just being flexible. As much as I wanted a perfect step by step plan in the treatment of my child, I have discovered that my sanity survives by only focusing on what’s directly in front of me.

Sometimes, I can focus on months at a time; sometimes all I can see is tomorrow.

If you don’t do this, you will feel like you are playing a game where the rules are ALWAYS changing, because, trust me, they are.

Really, instead of “Step by Step Cleft”, I should call this blog “One Step at a Time, Cleft!” Because that’s really is the best way to do it!

So go out there and get educated, kids! The word "cleft" in Google should do the trick!