Help with Pierre Robin Syndrome

[Topher's Mom]

I have a friend whose niece had a baby 2 1/2 weeks ago born with Pierre Robin. They are going to be doing jaw surgery on her this week. I know there are a couple of you on here with children born with PRS & I'm hoping you can help me. I'd like to know if there is a forum like this for PRS - somewhere she can go & get support & information.

Karol

[faywrayy]

Hi Karol,

There are 2 forums that I know of, but they aren't nearly as busy as one like this. Here are the links:

http://health.groups.yahoo.com/group...n/messages?o=1

http://members3.boardhost.com/PierreRobinNet/

The first one is a Yahoo group, so they'll need to sign up. The second is public.

My daughter Kate did not have the jaw distraction, but I've been where they are, know how heartbreaking it is, and if they want to talk, I'm all ears.

Let me know.

[Topher's Mom]

Thanks Angela. I'll give them the sites & let them know of your offer.

Karol

[faywrayy]

Great. Let them know also, I'm willing to let them see pics of Kate then and now, so they can see how much her jaw has grown out in 20 mos.

[KJKK8437]

Hi, Karol:

Count us among the PRS families. Let us know how we can help.

Jaw distraction was not offered to us at our hospital. But I know it is very much promoted at many hospitals. This is a regional difference -- hospital by hospital, sometimes. There are multiple schools of thought about the jaw distraction (whether it is good or bad), and about when to repair the palate (earlier or later). I think there are plusses and minuses to every approach.

I think it is important to recognize that there is no standard of practice for PRS, so if for any reason your friend's niece feels at all uncomfortable with the treatment, she should STOP AND WAIT. Unless the child is in life-threatening immediate danger, there is TIME to wait and choose carefully. There is almost always a doctor or a hospital with a different approach. (E.g., some surgeons will not repair a palate before 2 years. Others feel that 6 months to 9 months is the optimum time.)

One thing I think some of us PRS folks on the Board share is regret that we didn't have, or didn't take, the time to understand our options before we chose. If I can offer your friend's niece anything at all, it is enough knowledge to know to take the time and get comfortable with the choice.

Again, anything we can do, just name it. We are happy to talk, or email, or whatever might be useful.

[faywrayy]

Originally Posted by KJKK8437

I think it is important to recognize that there is no standard of practice for PRS

One thing I think some of us PRS folks on the Board share is regret that we didn't have, or didn't take, the time to understand our options before we chose.

Karin is so right. The feeling of regret is a common thread among PRS families. There's a lot of "if only" among us. And the regional differences she speaks of are really wide and diverse. I always say, if Kate had been born near _____, or ______ she'd have had a jaw distraction immediately. But it wasn't offered to us.

Again, Karin is right. If there's time to research and gather information and absorb it, they should do it. We made a lot of decisions out of the desperation your friend's niece is undoubtedly feeling right now, and I'll always wish we'd been better informed.

Again, I'm willing to share my experiences if they'd like.

[Lifeisgood]

Hi - I just thought I'd chime in here. I know Harlie doesn't have PRS - but she does have an underdeveloped jaw (and missing bones) and she JUST had bone graft jaw reconstruction surgery (June 3rd).

Harlie is 20 months old now and no growth occurred (probably the missing bones had something to do with it). She also has some other craniofacial abnormalities - missing her left ear, big skin tags on both sides of her face and her left eye didn't close properly (and for the first few months she couldn't close it at all, which was very unsettling). Anyway, my point is that I remember wanting them to fix her of everything right THEN! I didn't want to wait for anything. But, every doctor/surgeon, said that I needed to give her a chance to grow to see how things changed. And they were right. Her eye closes now just fine (will still need surgery) and her face did change. As she gained weight, etc.

Now at 20 months she finally had her jaw reconstruction (not the same as distraction - they took bone from her skull and put it in her jaw). She will be wired shut for 8-10 weeks now.

This has been the hardest surgery for me (it was her 10th and two of those were on her heart). It was no joke and definitely not something to be entered into lightly.

I couldn't agree more with Karin and Angela - giving herself time to research and learn all her options would be the best thing she can do for her - and her baby. I know it is different for every child - what is good for one, isn't good for another. But, she does have time. And I know a girl whose daughter had PRS and a trach for less than 2 years and her jaw grew out beautifully on its own - so I know it can happen. Who knows, her daughter could be the same way??? It is SO hard at the beginning. I remember thinking I will never have the patience necessary, but I found it.

I hope this helps a little. I know I was NOT prepared for how hard this would be. I put my blinders on and just took a leap of faith. Maybe not the smartest thing in hindsight.

Best of luck to your friend's niece and her baby.
-Christy

Here is a before and after of Harlie:

At 3 weeks old:
[IMG][/IMG]

At 12 months old:


At Post-Op Day 2 (20 months old):

[Topher's Mom]

Thank you all so much. I talked with Jessica today & they are comfortable with their decision. She said the doctors did not rush them or pressure them in the decision. They have gathered all information & seem pretty informed.

Christy, thank you for the posting the pics. It is great to see how Harlie has changed over the last 20 months. She is a beauty. I've been keeping up with her since her surgery. I'm glad she is doing good.

Jessica said after the surgery she may be interested in talking with you all. I'll
let you know. Thanks again.

Karol

[Rachel8fan]

Hi,

My grandson also has PRS. I can't really add to much to what others have said but Nathaniel had a jaw distraction in 11-07. I would be happy to answer any questions.

Rachel

[Peyton's Parents]

My daughter has Nager's Syndrome and has the small jaw and cleft palate. She was trached at 3 days old at UC Davis and we were told her jaw was too small for a jaw distraction. In the last nine months we researched other surgeons and just had her first jaw distraction last Monday at Lucile Packard Children's Hospital. He will repair her cleft palate in the next few months. Our surgeon told us had she been sent to their hospital they would have tried distraction right away. We have played the what if game as well as many others on this site have I am sure. Unless there is an immeadiate need for a trach there is some time to research other options - and then they will just need to make the best decision they can. We were made to believe there were no other options at the time our daughter was trached. Now that we know what we know - we may have gone a different route. But I believe things happen for a reason so we are just looking forward to a time in the future when she may be trach free.