9 months old, before operation
4 hours post operation
6 weeks post operation

Medical Procedures

Below are brief descriptions of various procedures.  Talk to your medical professional for more details.  Please note that procedures and results vary. 

Genetic Testing
After genetic counseling with a geneticist, a quick blood draw is required to send a sample to a lab. It may take up to a few months to get results that may be inconclusive as some mutations are found with individuals with type 1 and type 2. 

​Frontalis Sling
This procedure is the most common correction for ptosis which is also found in individuals without BPES.  The eyelid is connected to the frontalis muscle which is used to raise the eyebrows to correct the lack of levator muscle.  There will be three incisions above the eyebrow. The material used to connect the muscle varies including facia lata (frequently tissue from one's thigh or donor tissue) or a synthetic material (silicone or supramid).  Often performed at under 1 year with synthetic material, then later with facia lata.  This can fall and need to be replaced but is frequently very successful for BPES correction.

Levator Resection
This is another approach to ptosis correction where the levator muscle in the eye is shortened to improve the ability to open the eyelids. 

"Widening"
Various procedures are done to widen the eyelids.  Canthoplasty is done to reshape the inner (or outer) eyelid with an incision and reconnection of tissue to create less space between the eyes. Transnasal wiring can also improve the space between the eyes.  Z-Plasty is done to improve the epicanthus (upward) fold.

Medical specialists

Ophthalmologist
A physician who specializes in medical and surgical care of the eyes and visual system. 

Occuloplastic Surgeon
An ophthalmologist who specializes in plastic and reconstructive surgery. You may find one who specializes in pediatrics as well. 

Craniofacial Surgeon
A surgeon who specializes in plastic surgery dealing with deformities of the head, skull, face, nick, and jaws. 

Geneticist
A physician with special training in medical genetics. 

Genetic Counselor
A healthcare professional with specialized training in medical genetics and counseling. 

Endocrinologist
A physician who specializes in diagnosis and treatment of diseases related to hormones. 

​Medical Social Worker
A social worker who works in a hospital, clinic or health agency. 

Advice for Surgeries

Before
  • Before surgery you may have a pre-surgery visit with your child’s pediatrician so that they can be cleared for surgery.  This is a good opportunity to ask your pediatrician for ideas about helping children and siblings understand and prepare for surgery.
  • For kids that are old enough to understand what is going on, or for older siblings, it can be helpful to create a book or story describing what will happen on the day of the surgery so that they can begin to prepare themselves.
  • It can be helpful to bring your child’s favorite comfort item to the hospital, and consider preparing a special gift for that day so that there are positive memories associated with the experience. 
  • Prepare yourself and other family members for what your child will look like immediately after the surgery, and know that the healing process will happen very fast.  Immediately following surgery there is a lot of redness, some blood, bruising and swelling.
  • Have a plan with the surgical staff about who will be there when your child receives anesthesia and when your child wakes up.  A lot of children are given versed prior to being put to sleep, which relaxes them.  However, waking up from being asleep can be very traumatic for children since they may not remember where they are, there are strange noises and people they don’t recognize around them.  Having at least one parent there as well can be helpful.
After
  • Make a plan to be able to take it easy for a few days at home if needed.  Most kids are back to normal within a day or so.
  • Some surgeons may prescribe an ointment to keep the suture sites moist as this can help with healing, Q tips are helpful to have on hand when applying ointment.
  • Surgery can be an emotionally challenging time, accept any offers from others to help cook meals or help with other children.
  • It can be helpful to have some of your children’s favorite snacks and beverages at home, to help when taking medicine.  A lot of pharmacies can flavor medications for children, but sometimes this needs to be requested.
  • It can be helpful to have tops for your child that can easily go over their head without coming in contact with the face—pajama tops or button up shirts or cardigans work great in those early healing days.
  • It can be helpful to take one picture a day.  You will be amazed at how quickly your child will heal!
  • Try to keep your child from doing vigorous activities, and certainly avoid sports or activities that could cause trauma to their face.
  • Talk with your child’s teacher before your child comes back to school, so that they can explain to the other students what to expect.

Helpful items

Here are some items that may be helpful based on recommendations from people with BPES or their caretakers.