Pierre Robin - To orally feed or not to feed?

[cwright655@aol.com]

My six month old daughter Shelby has PRS and her craniofacial
surgeon is opting to wait until 15 mos to repair her cleft
palate. She is completely NG tube fed and is scheduled for a G
Tube this month. He is still planning on a trach at 15 mos for
the surgery in case of respitory distress. She is able to lay and
play on her back without choking but feeding is still very
difficult due to her choking and breathing difficulties when
eating. According to her swallow exam she does not aspirate when
she does swallow. I had no idea that early repairs were done on
PRS babies with cleft palates. Any suggestions for pursuing
earlier surgery? We are from Northern California and I am worried
about all of the negative affects of surgery so late. Her ped
does not want her on any oral feedings until her surgery - he
states that it would only confuse her when having to re learn how
to process things in her mouth and swallow. My instincts tell me
not to wait until 15mos to give her anything orally. Any
suggestions from parents out there?

[lisa-lmo1118@aol.com]

my daughter has pierre robin syndrome. had some problems her
first couple of weeks. i do bottle feed with the cleft palate
nurser from mead-johnson. it has worked great for us. julia is
almost six months and is doing well with some solids. the only
problem we have is the food gets into her nasal cavity sometimes
which makes her sneeze. other than that she loves to eat. i would
ask your doc if it would be ok to experiment with different
nipples etc. and try to bottle feed. it took julia and i a couple
of days to get comfortable with each other but it has worked out
well. we wish the same for you and your family.

[PRS Mom]

I have a son born April 1997 with PRS. He is 22 months old now
and doing fine---I often forget he has PRS! But his first year
was rough! It seems there are levels of severity when it comes to
PRS, and my son has been described as a 'mild case.' I mention
this because my situation may not be exactly the same as yours,
yet similar. When he was born, he was immediately fed exclusively
through an NG Tube. I felt this was not right. I insisted he be
fed orally, and through the use of the special Mead-Johnson Cleft
Palate Nurser, I was able to wean him from tube feedings by 1
month of age. My doctor insisted the NG Tube be kept in place
until he was about 2 months old---when I again suggested it be
removed. My son took to solid foods at about 6 months of age,
like normal babies. He did have some trouble with solids and
liquids coming out of his nose when eating, but we were able to
cope. His palate repair surgery was done at 10 months of age. I
understand that doctors like to delay palate repair with PRS
because of the airway risk when under anesthesia. After palate
repair surgery, NO sucking from a bottle is allowed. This may be
why your doctor is suggesting you continue with the tube feedings
until after surgery. Plus, the oral cavity is so sore after
surgery, it is very difficult to get them to eat at all!
Nonetheless, I think it is unusual to wait until 15 months to
introduce anything orally for your child! I would go with your
gut instincts (motherly instincts) and try to find someone who
will help you learn to feed your child orally. I think it is
likely your child would have few problems due to the fact you
said your child is able to ly on its back with no problems and
swallow without aspirating as well. Waiting until 15 months for
the surgery should be fine. Babies are very resilient and
adaptable---as I'm sure you've found---and I'm sure your child
will handle it well at this age. And have very little memory of
the trauma. Good luck.

[Anonymous]

My daughter also has PRS and started feeding with a special
nurser called a haberman right away. She also started solids at 4
mo. She got her trach at 2 weeks of age and they are expecting to
do her surgery at 9 mo.

[cwright655@aol.com]

I have been trying Shelby on small amounts of baby food on a
spoon and on my finger -- began this week. She hates it of course
and I feel like it is just sitting in the back of her throat
until she gags and then her breathing becomes out of sinc. This
happens with just giving her a little on my finger which leads me
to believe she is refusing to swallow. We have used the Haberman
and Mead Johnson but she eventually took less and less until she
stopped the oral feeds except for a few sips from a tippy cup
(seemed to make her choke less than the bottles). She has never
had a strong sucking reflex. I am so torn whether or not to
continue giving her baby food. I don't want her to choke or have
her get a food aversion and start clamping her jaw shut from
feeds being unpleasant. I am hoping that when the NG tube comes
out, she will be gagging less and have more room in her throat to
swallow. Thanks for all of your responses so far!

[E-MAIL jrslmscshsaol.com]

OUR DAUGHTER HAS PIERRE-ROBIN ALSO AND SHE EATS BY A G-TUBE
BUTTON. WE TRIED TO FEED HER BUT IT HAS NOT WORKED SO FAR. SHE IS
9 MONTHS OLD AND EVERY TIME WE TRY SHE ASPIRATES IT INTO HER
LUNGS. IT'S NOT FUN I KNOW. I DON'T KNOW WHAT TO TELL YOU SO FAR
WE HAVE BEEN UNSUCCESFUL.GOOD LUCK. WE WOULD LOVE TO HEAR FROM
YOU. THANK YOU, LAURA