What to Expect After Diagnosis
If you’ve received the news of a cleft or craniofacial diagnosis – whether it’s for your newborn baby or your baby on the way – you are not alone.
A cleft or craniofacial condition can be a challenging diagnosis. However, most children with cleft palates grow up with normal lives, and treatment can greatly improve both appearance and function.
Dr. Loo and the cleft palate and craniofacial team at BC Children’s Hospital are here to support you and your child throughout the treatment process.
Support for Cleft & Craniofacial Patients
Spring for Kids, founded by Dr. Loo, is a Canadian non-profit organization that supports children with cleft and craniofacial disorders by providing funding for education, research, surgical missions and continued care of patients and families.
We're also proud to support Zajac Ranch for Children and their fully inclusive summer camp, where everything is accessible for children with medical conditions and disabilities.
What is Cleft & Craniofacial Orthodontics?
Learn more about cleft lips and palates, including causes, common issues, treatment options and the conditions we treat.
Craniofacial Treatment Process
Learn what to expect throughout your baby's treatment when working with Dr. Loo and the cleft palate and craniofacial team at BC Children’s Hospital.
Impressions
- To begin the process, your baby will visit the British Columbia’s Children’s Hospital Day Care Surgery to have Dr. Loo take an impression or mould of the upper gums.
- This procedure is done when your baby is 7-14 days old, usually in the hospital, with an anesthetist nearby only.
- Our nurse practitioner will advise you of when your baby’s last feed should be before the procedure.
- A plaster cast will be made.
- This plaster cast will be made from impressions, after which our lab technician will craft the baby plate PNAM (Presurgical naso-alveolar moulding). It will be custom-made and designed specifically for your baby. This appointment typically takes place within a few hours.
- You can feed your baby immediately after he or she has been returned to you.
- At the end of this visit, your baby will be scheduled for an appointment at our orthodontic office to have the plate fitted. This appointment is typically within 24 hours. The remaining adjustment appointments will also take place at our office.
Plate-Fitting
At the plate-fitting appointment, Dr. Loo will show you how to place and remove the plate. To obtain the best result, the plate should be worn 24 hours a day until the roof of the mouth is surgically repaired, which typically occurs between 9 and 12 months.
Most babies can wear the plate 24 hours a day, right from the start, and within a day or two. You will also be given instructions on how to fit the various tapes (stretchy and Steri-Strips™) and elastics.
At first, the plate may appear loose. Denture adhesive can help your baby hold the plate in place.
Don't be surprised if your baby initially has a slight gag reflex. It's normal and should subside quickly after placement.
You can soothe your baby by holding the appliance with the top of your thumb while rubbing the lower gums with the bottom of the same thumb.
Associating food with the plate in the first few days helps your baby get used to the plate as well. Soak the plate in formula, insert the plate and feed your baby. This provides positive reinforcement for wearing the plate.
Nasal Stent Placement & Adjustments
Once your baby is used to the plate and is wearing the plate full-time, Dr. Loo will add the nasal stent to the plate.
The objectives of the stent are to improve the profile and symmetry of the nose on the cleft side.
Regular weekly or bimonthly visits to Dr. Loo’s office are required for gradual stent adjustments.
Taping
Once your baby is used to the plate, start taping the upper lip. Do not tape without the plate, as it can misalign the lip, nose, and gums. Leaving tape on without the plate may cause the plate to no longer fit. The plate is crucial for the best surgical result and should be worn full-time.
Taping begins by placing a piece of DuoDERM® (plastic skin) on both cheeks; this base tape may be left unchanged for one week. Tape is applied onto the DuoDERM in two techniques:
Stretchy tape alone (about 4.5 to 5 inches in length), or Steri-Strips and orthodontic elastics.
Dr. Loo will decide the best technique and demonstrate it. With either method, you will attach tape high on one cheek, past the eye, and stretch it across the upper lip. Gently squeeze lips until narrow, then attach tape high on the opposite cheek.
DuoDERM
DuoDERM (plastic skin) is a base tape that is fitted smoothly across the baby's cheeks.
Lip Tape
Lip tape must be placed very tightly, enough to see the lip blanch (looks white).
Sometimes cheeks react to taping, causing a rash. Change the tape daily, and keep cheeks clean and dry to prevent irritation. If irritation persists, contact us. If tape or elastic bothers the nose, cut a small U out of it below the nose, usually needed only in the first week, as the nose adjusts.
Surgery
The day before your baby’s surgery, clean the plate and mouth of any denture adhesive, and reinsert the plate free of the adhesive. Dr. Loo also removes the nasal stent the day before the lip surgery, leaving the original plate.
After lip repair, taping usually stops permanently, and the plate may be temporarily removed while healing. If the plate isn't in your baby’s mouth, keep it safe until your surgeon advises resuming 24-hour wear. If it remains in, leave it for 7-10 days before cleaning, then return to continuous wear with more cleaning.
This second phase of pre-surgical orthopedics focuses on encouraging the roof of the mouth to close naturally before palate repair at 9 to 12 months. The plate should be worn 24 hours a day and checked every two months or as advised by Dr. Loo.
If you find that your baby's plate is not staying in place after the lip surgery, even with denture adhesive, contact Dr. Loo and make an appointment to have the plate adjusted or possibly remade.
-
Step 1 Impressions
Impressions
- To begin the process, your baby will visit the British Columbia’s Children’s Hospital Day Care Surgery to have Dr. Loo take an impression or mould of the upper gums.
- This procedure is done when your baby is 7-14 days old, usually in the hospital, with an anesthetist nearby only.
- Our nurse practitioner will advise you of when your baby’s last feed should be before the procedure.
- A plaster cast will be made.
- This plaster cast will be made from impressions, after which our lab technician will craft the baby plate PNAM (Presurgical naso-alveolar moulding). It will be custom-made and designed specifically for your baby. This appointment typically takes place within a few hours.
- You can feed your baby immediately after he or she has been returned to you.
- At the end of this visit, your baby will be scheduled for an appointment at our orthodontic office to have the plate fitted. This appointment is typically within 24 hours. The remaining adjustment appointments will also take place at our office.
- To begin the process, your baby will visit the British Columbia’s Children’s Hospital Day Care Surgery to have Dr. Loo take an impression or mould of the upper gums.
-
Step 2 Plate-Fitting
Plate-Fitting
At the plate-fitting appointment, Dr. Loo will show you how to place and remove the plate. To obtain the best result, the plate should be worn 24 hours a day until the roof of the mouth is surgically repaired, which typically occurs between 9 and 12 months.
Most babies can wear the plate 24 hours a day, right from the start, and within a day or two. You will also be given instructions on how to fit the various tapes (stretchy and Steri-Strips™) and elastics.
At first, the plate may appear loose. Denture adhesive can help your baby hold the plate in place.
Don't be surprised if your baby initially has a slight gag reflex. It's normal and should subside quickly after placement.
You can soothe your baby by holding the appliance with the top of your thumb while rubbing the lower gums with the bottom of the same thumb.
Associating food with the plate in the first few days helps your baby get used to the plate as well. Soak the plate in formula, insert the plate and feed your baby. This provides positive reinforcement for wearing the plate.
-
Step 3 Nasal Stent
Nasal Stent Placement & Adjustments
Once your baby is used to the plate and is wearing the plate full-time, Dr. Loo will add the nasal stent to the plate.
The objectives of the stent are to improve the profile and symmetry of the nose on the cleft side.
Regular weekly or bimonthly visits to Dr. Loo’s office are required for gradual stent adjustments.
-
Step 4 Taping
Taping
Once your baby is used to the plate, start taping the upper lip. Do not tape without the plate, as it can misalign the lip, nose, and gums. Leaving tape on without the plate may cause the plate to no longer fit. The plate is crucial for the best surgical result and should be worn full-time.
Taping begins by placing a piece of DuoDERM® (plastic skin) on both cheeks; this base tape may be left unchanged for one week. Tape is applied onto the DuoDERM in two techniques:
Stretchy tape alone (about 4.5 to 5 inches in length), or Steri-Strips and orthodontic elastics.
Dr. Loo will decide the best technique and demonstrate it. With either method, you will attach tape high on one cheek, past the eye, and stretch it across the upper lip. Gently squeeze lips until narrow, then attach tape high on the opposite cheek.
DuoDERM
DuoDERM (plastic skin) is a base tape that is fitted smoothly across the baby's cheeks.
Lip Tape
Lip tape must be placed very tightly, enough to see the lip blanch (looks white).
Sometimes cheeks react to taping, causing a rash. Change the tape daily, and keep cheeks clean and dry to prevent irritation. If irritation persists, contact us. If tape or elastic bothers the nose, cut a small U out of it below the nose, usually needed only in the first week, as the nose adjusts.
-
Step 5 Surgery
Surgery
The day before your baby’s surgery, clean the plate and mouth of any denture adhesive, and reinsert the plate free of the adhesive. Dr. Loo also removes the nasal stent the day before the lip surgery, leaving the original plate.
After lip repair, taping usually stops permanently, and the plate may be temporarily removed while healing. If the plate isn't in your baby’s mouth, keep it safe until your surgeon advises resuming 24-hour wear. If it remains in, leave it for 7-10 days before cleaning, then return to continuous wear with more cleaning.
This second phase of pre-surgical orthopedics focuses on encouraging the roof of the mouth to close naturally before palate repair at 9 to 12 months. The plate should be worn 24 hours a day and checked every two months or as advised by Dr. Loo.
If you find that your baby's plate is not staying in place after the lip surgery, even with denture adhesive, contact Dr. Loo and make an appointment to have the plate adjusted or possibly remade.
Caring For Your Baby Throughout Treatment
Learn how to care for your baby during and after treatment for cleft and craniofacial conditions.
How to Care For Your Baby's Appliances
Babies typically get used to their appliances very quickly, and how adaptable they are will likely surprise you.
While it may be overwhelming at first, caring for your baby and their appliance will soon become routine, and it will be very rewarding to see the permanent improvement you have helped make in your baby’s appearance.
Here are the things you need to do to care for your baby and their appliance:
-
Clean the Plate at Least Once Per Day
After feeding, or at least once daily, remove the plate and rinse it in cool water. You may also hold the plate in the palm of your hand and brush it with a toothbrush and toothpaste.
Remember to rinse the plate well with water to remove the taste of the toothpaste.
Since the plate is made of acrylic, please do not:
- Boil or heat the plate in any way – it will distort.
- Put it in your pocket or drop it – it can get broken.
- Wrap it in tissue or a napkin – someone may throw it out.
- Leave it lying around – pets and children are very curious.
-
Keep the Plate in Most of the Time
If the plate is not worn for long periods, your baby’s mouth can change slightly, and the plate will no longer fit.
Therefore, please try to keep the plate in place most of the time and contact our office to have the plate checked if your baby appears to be having problems.
-
Store the Plate in the Case Provided
Anytime you remove the plate from your baby's mouth, please store it in the case provided. Your name, address and phone number should be clearly marked on the case.
-
Change the Lip Tape Several Times a Day
Change your baby's lip tape several times a day, making sure to keep pressure on the lip and underlying tissue.
-
Change the Base Tape & Steri-Strips as Needed
The base tape can be left on for up to a week before changing it. This protects the cheeks from the more frequent changing of the lip tape and Steri-Strips.
Common Issues & Concerns
Here are some of the common issues and concerns you may encounter when caring for your baby during treatment for cleft lip and palate.
If you are having significant problems, call Dr. Loo to have the plate checked.
-
Baby Pulling Plate Out
This may happen especially later in treatment. It is important to keep the plate in. Use more denture adhesive, put mitts or socks on the hands.
If the plate is left out the tongue can push up into the cleft and possibly widen the cleft. This makes the palate surgery more difficult and prone to complications.
For some babies, it may only be possible to have them wear it at night and during feedings. Others will refuse to wear it at all.
If this happens at this stage, we are often able to discontinue the plate and still provide your baby with a very good result.
-
Soreness, Redness or Bleeding
If you see any sore, red or bleeding areas on the palate or nose. Call Dr. Loo right away to arrange an adjustment.
-
Plate Not Fitting
If the plate is not fitting because of teeth coming in, contact Dr. Loo and make an appointment to have the plate adjusted as soon as possible.
Often, a slight adjustment will make the plate comfortable again for your baby to wear.
Post-Surgical Care
Children with clefts usually continue to receive treatment after surgery, including extensive orthodontic care, speech therapy, plastic surgery, jaw surgery, and prosthetic dental reconstruction.