Hi Im new to this.I have an 8 wk old daughter with pierre robin sequence along with an 8yr old son and a single parent, no fathers to be seen.Bonnyleigh my daughter is on an ng tube, not sucking on bottle well, she is trying!the breathing noises I have got used to and no the difference along with resucc training and jaw thrusts as she was in intensive care for 3wk as she was 4wk early, but still weighed in at 8LB 4oz!its difficult as Im on my own but have support with the cleft team.anyone got any advice that maybe it will get easier??

Dear Andrea

You might find it useful to speak to one of our trained parent contacts who has a child with PR sequence. If you click on the link below it will take you to their page on our website.

http://www.clapa.com/medical/parent_contacts/

Their names are Anita Swales, Lauren King and Louise Judge.

It is good to hear that you are getting lots of support from your cleft team but it can be very reassuring to speak to a parent that has actually been there and come out the other side.

We also have some parents personal stories on the Pierre Robin page that you will find interesting.

Kind regards

Sue

hi sue check ur emails, just getting the hang of this.andrea.

Hi Andrea,

I have a son with Pierre Robin Sequence who is about to turn 9 months. Luckily he didn’t need an ng tube he managed with the squeezy bottles. It has been a little bit hairy at times. He is my first child and he’s got reflux and had colic and the Pierre Robin had him waking every hour until his jaw grew forward when he was 6 months old.

He is the cutest little fella and had his palate repaired a month ago. The op went fine and he’s doing well since.

There is a another forum called Face Forward that has quite a few parents of Pierre Robin babies. It can help to talk to other parents in the same situation and also pick up tips. www.faceforward.org.uk

You must feel quite daunted at the moment it took a while for it to sink in with us. But here we are 9 months in and he’s doing great. It does get easier.

I won’t be online for the next few days but will check when I’m back on again to see how you’re doing. Make sure to stay in touch and if you have any questions please ask. Obviously can’t help with the ng tube, sorry. But anything else?

Bonnyleigh is a lovely name.

Dee