Treating cleft lip and cleft palate

First, the alarming news: cleft
lip and palate (CLP) occur in one
in 700 births in North America,
making them among the most
common major birth defects. But
there is also good news: both are
entirely treatable. With surgery
and pre- and post-op care, most
children born with CLP go on to
live completely healthy, normal
lives, with barely a scar to remind
them of their early days.

A cleft is a fissure, or gap. A
cleft lip is a split in the upper lip,
between the mouth and the nose.
The cleft can be unilateral (on one
side only) or bilateral (on both
sides).

A cleft palate occurs when the
roof of a child’s mouth has not
fused completely; cleft palates can
also be unilateral or bilateral, and
vary in size and severity. Cleft lip
and palate can occur independently
or together. These birth defects
occur during the first trimester of
pregnancy.

What causes CLP?

The reasons aren’t totally clear;
some studies have found increased
risk among expectant mothers who:

• smoke or drink alcohol
• are older
• have a family history of clefts
  (on either side of the family). But
  much of the time, the causes are
  unknown.

If your baby is born with a
cleft lip or palate, there will be
an examination immediately
after birth by a pediatrician or
midwife, who may recommend
X-rays, bloodwork or ultrasounds
to see how the other organs are
functioning. They will also try to
determine whether your baby is
among the five to eight percent of
children with CLP who also have a
larger genetic disorder.

Future treatments

You will then likely be referred
to a team of specialists who deal
with CLP, including an ear, nose
and throat doctor, a speech and
language pathologist, and an
audiologist. Babies with CLP
can have feeding difficulties, and
often need to drink from specially
adapted bottles. Other common
problems include recurrent ear
infections, dental abnormalities
and speech difficulties.

If your baby has a cleft lip, he
will have surgery to repair it when
he is around three months old. If
he has a cleft palate, the surgery
is performed between nine and
12 months of age. In some cases,
subsequent surgeries are required
for kids with cleft palate, to deal
with speech or dental issues.

With proper treatment,
coupled with a supportive home
environment, Canadian kids born
with CLP will grow up just like any
other child.

Facing the future
with dignity

• Babies born with
  CLP need immediate
  treatment and care – and,
  depending on where they
  live, that doesn’t always
  happen. “In Canada we
  are very fortunate,” says
  Estaban Lasso, executive
  director of Transforming
  Faces, a Canadian
  charity that promotes
  access to CLP care to kids
  and adults in developing
  countries. “When
  a child with CLP is born
  in Canada, they see a
  specialist team in less
  than 48 hours. There are
  30 CLP specialists at Sick-
  Kids Hospital in Toronto
  alone. But in developing
  countries, the parents are
  often shocked and they
  feel guilty and isolated.
  Sadly, this can lead to
  infanticide, especially in
  countries like China and
  India.”

• CLP is more common
  in Latin and East Asian
  populations. In some
  developing countries, the
  frequency is as high as
  one in 500.

• Transforming Faces’
  mission is to “close the
  gap in CLP care” around
  the world. They provide
  surgical treatment and
  follow-up care to the kids
  and their families. “Some
  kids require speech
  therapy for many years. So
  their needs don’t just end
  with the surgery,” says
  Estaban.

• Since it was established
  in 1999, the charity
  has helped more than
  10,000 kids from seven
  different countries: Peru,
  Argentina, Ethiopia,
  Ghana, China, India and
  Thailand.

• “We put a lot of value
  on training people from
  those countries – establishing
  medical teams that
  can provide ongoing care.
  Transforming Faces is
  about more than surgery.
  It’s about transforming
  lives,” says Estaban.

Originally published in ParentsCanada magazine, November 2012.