Son born 26.5.99 with Pierre Robin Syndrome

[Wendy@barfly.screaming.ne]

Would be grateful to talk to other mothers of children with
like diagnosis, particularly with regard to feeding. My son was
low birth weight (5lbs 4 oz) and is not thriving. Cannot adapt to
special teats. Any ideas?

[rkelli2532]

My daughter was born Feb 4 with PRS. She was unable to feed
and kept obstructing her airway. At one week she had a
"tongue/lip adhesion." Following surgury she had an N/G
tube for 2 months while the wound healed. Since the surgury she
has had no problems with her airway, and is doing just fine with
the Habermann. I found that fortifing her formula to 27 calories
per ounce, and zantac for acid reflux have made a world of
difference. Have you discussed using a feeding tube for any
feedings? My daughter kept hers in while we were transitioning
her to the bottle and she had no problems using a combo of N/G
and Habermann.



Good luck, and feel free to e-mail me, feedings are tough,
but they do get easier!

[K Wright (cwright655@aol.]

My daughter Shelby, born 7/30/98, could not adapt to any oral
feeders either. She had an ng tube until 9 mos and a peg (g-tube)
put in at 9 months. It was the most difficult and the best
decision (considering all circumstances) that we ever made. The
ng tube caused Shelby to develop a terrible oral aversion and
gagged her regularly. Since the GTube was placed, she has
completely gotten over her aversion, is gaining great and is now
enjoying small spoonfuls of pureed babyfood with very little
gagging. It is a tough call on which to do first but if you do
decide to go the ng tube route, be sure to be very conscious of
the potential for oral aversion. Please feel free to contact me
if I can be of any help.

[prn@pierrerobin.org]

I have an 11 year old son with PRS. I used the Mead Johnson
Cleft Palate nurser and made the criss cut hole in the nipples
longer. I squeezed the formula into his mouth. PRS babies can
tire very easily during feedings because they have to work so
hard to eat and breathe. We even used the sippy cups with screw
on lids, just poked more holes in the lid for the vacuum effect.
It will get better as you learn the most effective way to feed
him and he learns how to coordinate the breathing and feeding.



Let me know if I can help further.

[stymanr@mpx.com.au]

Our daughter was born with PRS 9/7/98. She was feed by a tube
for 3days, but we made a decision, not to allow this to continue,
as in the long term it can be detrimental to the development. It
was alot of hard work and a long time, but she now is feeding
with a chuchu teat, with no assistance. It took 3 months before
she regained birthweight. We had to fortify her formula to 30
cals per ounce, and have only recently cut it down slightly.



The decisions you are faced with are not easy, but look at
the long term outcomes. Tube feeding in any form is not good,
because it retards the development of the lower jaw, prolonging
hte problems. Also the childs system grows dependent on these
methods and takes time to readjust. The other thing to consider
is does your child really require these extra traumas.



In Australia we have what is called Queensland bottles, which
are soft enough to squeeze along with chuchu teats. The teat has
a hard top, which creates a psuedo palate. All that is required
is a chewing motion, or a sucking motion if your child has
one(something that tube fed babys do not develop). The bottles
are soft, so that as the baby is sucking on hte teat you can
squeeze the formula into their mouth. It works well, and gives
the baby a good start for post surgery feeding.



I hope this all helps in some way, or atleast gives y9ou some
more to think about.



If there is anything else i can help with just email me.

[jodi.wiesing@med.va.gov]

We had two children with PRS. Our daughter used the Haeberman
bottle after 6 days in the hospital of "training" her
and us. Her oxygen levels would drop significantly while feeding.
She did adapt well but it was very intimidating for our families
to feed her. By 5 weeks old, I was able to put a large cross cut
in the regular nipples and she did wonderful with it. She bit it
- not sucked. Our son started on the Haeberman but then someone
at the cleft palate clinic introduced us to the Similac company's
premie nipple. It has a cross cut(we still had to enlarge it) and
an extra hole. You have to call the Similac company (use the 800
# from the formula can) and order them if you don't have a
connection with a hospital. Nick did fabulous with this nipple.
It's softer than any store nipple so it's easier to bite open.
Other than being red in color, it doesn't look any different so
it reduces stares and questions when we're out. Hope this helps!!