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laryngeal cleft


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#1 tess_galea@hotmail

Posted 10 December 2012 - 08:24 PM

Hi.  My grandaughter was born premmie at 33.5 weeks and has a laryngeal cleft and vomits quite a lot.  They said she has a very bad case of reflux.  She has been in the Brisbane Royal Childrens Hospital since 17th June, 2012 and is still there.  Nobody seems to know how to fix her.  She is being fed her milk through a peg in her belly which goes into her intestine and she still vomits.   Even when she was fed by TPN and no milk, she still vomited.  The vomiting has to stop before the laryngeal can be fixed but no-one knows what is causing the vomiting and therefore can't stop it.  Ruby was born on 31/12/2011 weighing 1.23kg.  She is now nearly 12 months old and is 7kg.  Putting on weight is a very very slow process due to the vomiting.  Ruby's poor mum has been living away from home at the hospital away from her husband and all of her supportive family for 6 months and I thought I would put this on here hoping that someone somewhere may have gone through the same thing and have an answer.

#2 *-*

Posted 10 December 2012 - 08:35 PM

I am so sorry to hear you and your family are going through this.  I have no real knowledge of your situation, obviously, but I can relate to the continuous vomitting.

Did they do a fundoplication when they did the peg?

#3 tess_galea@hotmail

Posted 10 December 2012 - 08:55 PM

QUOTE (*~Katrina~* @ 10/12/2012, 08:35 PM) <{POST_SNAPBACK}>
I am so sorry to hear you and your family are going through this.  I have no real knowledge of your situation, obviously, but I can relate to the continuous vomitting.

Did they do a fundoplication when they did the peg?



Hi Katrina.  Thanks for your reply.  What is a fundoplication?

#4 FiFiLicious

Posted 11 December 2012 - 10:48 PM

Hi Tess,
I do not know anything about your daughters situation but I have a cleft baby. He has/d a cleft lip.  I am in touch with "cleft pals" Victoria who are a very active, helpful forum on Facebook. Do you want me to screen for ideas there or I can put you in touch with the admin person so you can join? There must be someone there that has experience! PM me if you want me to put you in touch.  You, of course can google Cleftpals - I found the Vic branch to be the most active.

Your poor babies! Such a long time to be away from home. My babes was 32 wks 1.5 kgs born but at 7 months, you'd be pressed to think he'd been born early. Take care of each other, being in hospital for so long is awful.
Fiona

#5 tess_galea@hotmail

Posted 13 December 2012 - 09:16 PM

QUOTE (FiFiLicious @ 11/12/2012, 10:48 PM) <{POST_SNAPBACK}>
Hi Tess,
I do not know anything about your daughters situation but I have a cleft baby. He has/d a cleft lip.  I am in touch with "cleft pals" Victoria who are a very active, helpful forum on Facebook. Do you want me to screen for ideas there or I can put you in touch with the admin person so you can join? There must be someone there that has experience! PM me if you want me to put you in touch.  You, of course can google Cleftpals - I found the Vic branch to be the most active.

Your poor babies! Such a long time to be away from home. My babes was 32 wks 1.5 kgs born but at 7 months, you'd be pressed to think he'd been born early. Take care of each other, being in hospital for so long is awful.
Fiona


#6 tess_galea@hotmail

Posted 13 December 2012 - 09:25 PM

Hi Fiona.  Thanks for your reply.  Ruby's mum is in touch with Cleft Pals in Brisbane so she has their support but unfortunately it is the vomiting that is the main problem that Ruby has.  No-one seems to be able to stop that.  We just have to hope and pray that one day very soon it does stop.  Afterall miracles do happen.

#7 mygirlcharlotte

Posted 16 December 2012 - 12:09 PM

Sorry to hear, but i am glad someone else has this too..My little girl was born at 35 weeks and weighting in at 4 pounds 10..At the age of 4 yo after they done alot and lot of tests they took all her food and milk off charlotte and gave her a PEG..even after it has heal she still on the PEG and she doesnt know how to swallow

#8 Sunshine~Kisses

Posted 10 January 2013 - 08:22 PM

DS and I were in the RCH in Brisbane a few weeks ago having his cleft lip repaired, and I am pretty sure I met a mum that knew your daughter in there. The condition sounds familiar anyway. I hope you can get some support and answers and you have your daughter and grandaughter home soon bbighug.gif




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