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FAQ's

Questions most asked on the board and some simple
answers.

What Causes clefting?
This is still a mostly unknown question. It is most likely a combination of several factors including, environment, genetics, and also some medications. Clefts are formed very early in pregnancy around 4-8 weeks gestation. Most women don’t even know they are pregnant at this point. The tissues of the face fail to fuse and it causes an opening in the lip or palate (roof of the mouth) or both. This is a common birth defect and it is considered repairable. Most cleft affected children will have to go through several surgeries to give them a "normal functioning" lip and palate. Some common things associated with clefts is the reoccurring ear infections, sinus infections, hearing difficulties, speech delays, nasality in speech and eating and weight gaining difficulties. All of these things can be helped medically or with therapy. Special bottles will help feeding issues for many. The first surgery usually lip repair is generally done at 10 weeks of age and 10 lbs weight. This is just an estimate as each surgeon is different. Palate repair is generally between 10-18 months of age. Bone graft for those who need it is done when the adult teeth erupt for most that is between the ages of 8 to 10. There are many more surgeries depending on the severity of the cleft and different concerns that may arise.
This is a totally fixable birth defect. These children will go on to lead happy adult lives with the guidance and love and acceptance of those around them.

This list of questions was compiled by those of us that have already gone through surgery.  Some of these questions we wish we would have had the opportunity to ask but just didn't know exactly what we should and shouldn't worry about.  So, in thinking about it this list was created.   It is here so that those of you still facing surgery have a really good idea what questions you should know the answers to.  It also one of the things that makes this board a wonderful resource.  One persons experiences can help so many others.

 

 

Questions for the PS (before surgery):

How long have you been doing these types of repairs?

How much of your practice is cleft based?

How often do you research new cleft surgery procedures and review your own procedures?

Will my child wear any type of appliance before surgery?

Exactly how will the procedure be done?  (Millard type surgery, Z-Plasty, strait line etc.)

How long will the surgery last?

What will the scars look like? Can I see pictures of children with similar scars whom you have worked on?

Will her lip be symmetrical? Will she have the cupids bow and normal creases?

What types of physical distress will there be (i.e. swelling, bruising,redness of the area?) How long will these last?

Can I see pictures of children who have been through similar surgeries so I know what to expect? (hospital pics so as not to be surprised)

How long will the IV need to be in?

How long will she be in the hospital?

What type of sutures do you use (dissolving or none)? If none - When will the sutures be removed? Is this an office or hospital procedure?

What type of diet/food restrictions will be required? Before and after surgery?

How soon after surgery can I hold my baby?

What are the discharge requirements?  Will baby need to be eating/drinking so much liquid, have a certain number of wet diapers etc. before being released?

 

Questions for PS regarding Post-Surgery:

What types of events after surgery can make scarring worse?

What type of pain medicine can my child have? How often can she have it? Will she sleep a lot more due to drugs?  Will we have a prescription for it or can we get it at the hospital?

Should we clean the sutures? How do we do this? How often? Do we need to put on a dressing (tape, gauze, Neosporin etc.?)

Whom should we call if we have any questions at all after surgery? Surgeon? Primary Care Physician?

What restrictions or limitations will she have after surgery? Will my child need to use arm restraints or a Logan's Bow? For how long? What about supervised periods of time without them?

When will our follow-up visit be? Do I need to make this appointment myself or will the hospital staff make it for me?

What happens if she bumps her lip?

 

Questions of the hospital:

Can we be present when the anesthesia is administered?

Are we allowed in the recovery room? When she wakes up, can we be there?

What will be the time spent in the recovery room?

What can we expect when we go to the hospital for surgery? Check-in procedures etc.

Are there any tests that need to be done the day of surgery, can we have them done ahead of time?

Can we stay with our child in the room?

Can we get copies of the paperwork that will need to be signed the day of surgery so that I may review it ahead of time?

Do parents or nursing/pumping Mom's get meals?

What are parents responsible to bring? (IE: Does the hospital or PS supply arm restraints or do the parents get those from an earlier visit and bring them?)

 

Questions for PS at follow-up visit after surgery:

Is it perfectly healed?

Can she resume normal activity like sleeping on her stomach and chewing on her fingers?

Do we need to be concerned about her bumping it more then anything else?

For how long should we be extra cautious about sunlight and scarring?

Should we use Vitamin E oil or any products like scarEase? How often? How long?

How often does she need to come back for checkups?
















Things to bring to the hospital
 
  • A call list, and someone to make all those calls for you!
  • Blankets for babe and you, the hospital got a little chilly and we wanted our daughter to have something that smelled like home.
  • Book or Diary, or something for you to try to keep your attention or to help keep you busy.
  • Breast Pump if you are pumping, Cols. Children's has a pumping room but I pumped right in the waiting area.  There are outlets everywhere.
  • Camera - to take lots and lots of pictures!!!
  • Change for the vending machines.
  • Comfort items for you and babe.  We took a heart beat bear and they kept it with our daughter throughout surgery and even turned it on.
  • Diapers and wipes so she has what she is used too.  They offer some and if you open the pack you get them all, they're expensive but do get billed to insurance.
  • Favorite toy - there are toys for the little ones all over the hospital but if your babe has a favorite it might be a nice reminder of home.
  • Friends and Family!  Very important.  Surround yourself with loving people!
  • Fresh set of clothes for Mom and Dad to go home in.  We spent the night in her room and took sweats as well.  Also don’t wear anything too nice blood could get on them
  • Ice Chest, for holding snacks, beverages and expressed breast milk if you are pumping.  (The nurses can store that for you as well though.)
  • Insurance Cards, Identification etc. - you will need this at check-in.
  • Kleenex!
  • Money if you want to grab something to eat from the cafeteria or have something delivered. (The receptionist desk can give you a list of places & some menus.)
  • Medications you may need for yourself.
  • Onesies that button down the front so you don't have to put anything over the little ones head.
  • Present - if your child is older you may want to have a special present to give them after surgery, or let them pick something out from the gift store on the way out.
  • Pictures!  Lots of them for you to look through while waiting during surgery.
  • Thank you notes, if you want to leave them for the Dr. or nurses who may have been helpful.
  • Toothbrush and Toothpaste. 
  • Writing utensils and paper - for writing down questions or taking notes on after care.
  • Headache reliever for Mom & Dad, nurses can’t give you anything if you get a headache
  • Calling Card, most hospitals only allow local calling and cell phones are no-no’s
  • Slipper for those of you staying over night, hospital floors get cold
  • Something to keep you busy
  • Bring your list of questions for the Doctors and nurses

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