>You mentioned in a recent post that at the ILCA conv. you learned of a
>couple of docs in the U.S. that did early cleft repairs.  Could you share
>more info w/ the list?

Michael Denk and his partner, Dr Magee have an internet site at
Magee-Denk.com.  They have a joint private practice in Norfolk, VA.

Their goal:  "To return the child to normal as soon as possible.  To make
this no greater a parental concern than, say, a hernia."

The reason cleft repairs aren't done early (besides the "We've never done it
that way" syndrome) is a belief that early surgery impairs ultimate jaw
growth.  As it is, 60-80% of cleft palate repairs later need further maxilla
surgery along with orthodontia.  Dr Denk feels jaw growth is impaired by any
surgery, whenever it's performed, that artificially-fed children don't heal
as well, and that, of course, delaying surgery greatly increases the
likelihood that the child will be formula-fed.  The palate, he points out,
is used to suck, swallow, and speak, and denying a child a year of normal
practice can have long-term consequences.  They've been doing this for at
least 10 years now, so while they don't have adults they can point to,
everything looks good so far.  They did 77 last year, he himself has done
about 1100 total.  They do lip and palate within the first two weeks.  If
the palate gap is too wide, they may do the lip immediately and then the
palate at 2-3 months; the lip repair helps close the palate.

Their rationale:
we currently do neonatal surgery in other areas
historical results of early repair are favorable
the "fetal wound healing" phenomenon may reduce scarring
there are now excellent pediatric anesthesias
clefts mean severe feeding difficulties
    (as the second half of the day described in sad detail)
cleft defects are tough on the whole family
the baby's immune status is best in the early few weeks
*all* repairs affect facial growth

They use Derma-bond, with few stitches.  Post-surgical pain control is
generally rectal Tylenol, usually without morphine or codeine and usually
for 24-48 hours.  Neonates, he said, seem to manage the pain better than
older children.  If the baby can take 1/2 to 2/3 its normal intake in the
first couple days post-surgery, it's discharged and seen back in a week.

They don't immobilize post-op.  They figure sucking is not a harmful
activity (certainly no more harmful than crying), and they've not seen
problems resulting from unfettered babies.  They begin feeding in the
recovery room, but it takes 2-3 weeks post-palate-repair for feeding to "go
well", and 4-8 weeks to exclusive breastfeeding.   Their feeding team's goal
until healing is complete is full feeds in 30 minutes, whether wholly at
breast or with supplementation.  Post-operatively they tend to see an
immediate attempt at feeding, then a long sleep, then another feed about 12
hours later.

Other sites:
www.cleft.org which is run by a former Magee patient
www.OperationSmile.org which describes the work they and others have done
overseas, repairing clefts on older children in Third World countries.

The nurse/IBCLC with whom he's worked in the past describes babies with
submucous clefts (which are often missed) as "sound like Maggie Simpson" - a
wet sort of smacking suck that sounds like suction breaking.

They agree that it takes more than a willing surgeon.  It takes a good
pediatric anesthesiologist, "an outstanding ICU", and an experienced nursing
staff.

Ideally, they do consults before delivery.  That gets the parents' denial
phase over with before the birth, they're immediately accepting of the baby
and what needs to be done, and everyone is ready to move quickly.

If his talk wasn't convincing enough, he had video footage of a former
patient, now a pudgy 8 months old, rolling around on his mother's lap and
saying in a loud voice, between happy sips at breast, "Da-da-ba-ba-ga-ga" -
a poster child for excellent speech.

By the way, there's a Ronald McDonald house within walking distance of their
hospital :-)

Diane Wiessinger, MS, IBCLC  Ithaca, NY
www.wiessinger.baka.com

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