Pierre Robin Sequence/trach/gtube

[maddysmommy]

Hi i have always used this site but always from pregnancy related things...i just had my son five weeks ago and he was born with pierre robin sequence..which is a small jaw and soft cleft palate. He had to have a tracheostomy because of his blocked airway..which was his tongue blocking his airway bc there was no where for it to lie beings his chin was so small..i am having a hard time finding anyone anywhere who has children with this or who can just relate with a trach...im trying to make a decision on a gtube..but am having a hard time doing so..id like to get feedback from other parents instead of just drs...also the possible nisan gtube is being explored...i feel so lost..like i have no one to talk to who is or has experienced this first hand...any help would be wonderful thanks

[meripav]

Hi.  Our son has Pierre Robin sequence and he was born in February.  His airway is open and did not need trach.  However - I agonized over the G-tube decision, too.  I can say managing the G tube is way easier than the NG tube which our little guy used to pull out once a week.  He also had a nissan fundoplication with the g-tube insertion and the combo stopped the reflux which kept causing him to aspirate.  The decision for surgery is always tough.  I found it helpful to keep reviewing the pros and cons with our son's docs.  In our case, he is doing much better and really thriving on the G-tube - and we're not scared all the time that he might aspirate.  I hope you have a good support system around you.  Good luck and we'll be praying for you and your son.

[maddysmommy]

HI, my son did end up having the nissan gtube and its helped him a great deal.  He finally came home this past saturday and its been great.  He has been spitting up a few times since he's been home..which i thought he couldnt do with a nissan..he doesnt even need to try hard he just coughs a few times and out it comes..formula mainly..out his mouth luckily not thru trach..does your son oraly feed at all?  My son is doing ok with the bottle..he did do much better before the surgery..but who know's i cant figure that one out...life's deft been difficult..your lucky he didnt need a trach..bc that is soooo much work...i feel living room bound...and house bound..its a very scary thing that im trying hard to get used it..