Cleft Care Team – Who and what?

Cleft Care Team – Who and what?

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The Cleft Palate Team you choose will become an extension of your family.  You must feel comfortable with your extended family, be able to communicate effectively regarding the care and treatment of your child, express your desires with regards to your child’s healthcare and know that your child is in the hands of people who truly care.

There are several different members that will make up your Cleft Palate Team.

  • Plastic surgeon
  • Pediatrician
  • Speech pathologist
  • Audiologist (hearing specialist)
  • Nurse
  • Social worker
  • Otolaryngologist (ear, nose, and throat physician)
  • Genetics specialist
  • Pediatric dentist
  • Orthodontist
  • Prosthodontist

Each member works with one another to ensure the best care possible for your cleft affected child.  Initially, you will see your Cleft Palate Team weekly up until your cleft lip repair.  After that you will have monthly visits that are called Cleft Clinic Days.  You will get an early check in time and then you spend a good portion of your day seeing all of your different physicians.

Initially, you will only need to bring a diaper bag with all of your essentials that little one needs.  As time goes on though and  your little one gets bigger, starts crawling and then walking you will need to make sure to pack a bag of “tricks” to help occupy you and your little one for the all day affair that it becomes on Clinic Days.  Usually your clinic will have a Disney movie on (ours does) and a play area with crayons, coloring books, easel with chalk, etc.  My bag consisted of his favorite toys, stuffed animal and blankie.  We had several monster trucks and hot wheels that he could sit on the floor and play with.   Bring their favorite snacks and pack more than you think you should so that you are not in fear of running out.  Our clinic provides water, juice boxes, and various crackers and snack items. I highly recommend not giving your child juice at all while at your clinic day because it really hypes them up and getting them to focus and stay on task for anything becomes an experience you and everyone around you would rather not have.

Bring snacks for yourself and a large water bottle.  Remember, it’s going to be a long day and you need to take care of yourself as well as your little one.  If your significant other is able to attend clinic days with you consider yourself lucky.  I know I did.  We were able to get a few things done at clinic day by switching off between one another watching our little one.  My husband was able to check in at work and handle things over the phone or via text message.  When he was finished I was able to pay bills, return phone calls and answer emails.  If you are able to bring someone with you to help out it makes a big difference in your day and getting through the long hours at the doctor’s office.  I was fortunate enough to be able to have my husband attend all of these appointments.  I think there was one time he had a meeting and could not make the Clinic Day so my mom offered to go with me and believe me, I took her up on it.  Just having those extra pair of eyes and hands of a loved one around to help me, help my son was a big deal.

It also made a big difference on the drive there and back.  Traffic around Los Angeles is an experience and getting anywhere fast or on time is laughable.  Having myself or my mom in the backseat to attend to my son on the long drive was huge.  Our son usually fell asleep but if he needed to be fed or just paid attention to there was always someone to do that while the driver was able to focus explicitly on their road rage.  Do not be afraid to ask for help from family or friends able to do so.  It’s a lot and these days take a great deal of energy. Hopefully I’ve given you some helpful advice here so that you can plan your Clinic days accordingly and really understand beforehand what goes into them.

I do want to tell you that Clinic Days with your Cleft Palate Team are not just long and drawn out, sapping you of every last bit of energy you have.  They are days that are also rewarding!  We get to hear from several different team members about our child’s progress and what the continued plan is. We also made quite a few friends with other families on these days.  Every parent and child there is dealing with a craniofacial anomaly, cleft lip, or cleft palate.  It was good to see all of these kids playing with one another and being able to see moms with their new babies that are just so cute!  All of these parents in one place able to speak to one another, offer advice, share information was such a welcome relief.  We are in the same boat trying to be the best parents we can be and sharing information with one another is a great way to be able to do that.

New moms are always nervous about the taping, nasal stents and first repair surgery.  It was good to be able to introduce them to our little guy toddling around and be able to comfort them about the upcoming surgery or offer advice about the taping.  I remember one mom there with twins and she was by herself (which of course made me feel less than because my husband always came with me) but she asked me if I would hold one of the twins while she fed the other and I was so excited!  I got to hold this beautiful baby and chat with a wonderful mom about all the stuff she was doing and going through.  We just had this instant ability to communicate with one another due in great part to our similar experience as cleft moms.

Cleft Clinic Days are not all bad and you just might make a lifelong friend there.  Don’t be afraid to reach out and ask questions of other parents.  You are going to be there for quite a few hours and for the first year of your child’s life more time will be spent here than anywhere else.