Jump to content

laryngeal cleft


  • Please log in to reply
7 replies to this topic

#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




1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users

 

Teaching our son to say no to violence against women

Today, on White Ribbon Day - and every other day - we're teaching our son to say no to violence against women.

Mothers told to breastfeed in 'spacious' toilet

If there is one thing the owners of Tillings Cafe can be certain of, it is that the eatery won't win the award for Britain's best baby-friendly coffee shop any time soon.

Mother gives name to son dumped down drain

A woman who admitted to dumping her newborn baby down a Sydney drain has reportedly been allowed to give him a name.

Taking small steps to reduce stress

Are you feeling used up by life's stress, family problems and a demanding job you can't turn off? Many people are way beyond work-life exhaustion. They are functioning as robots.

Bad news: we're running out of chocolate

The world's biggest chocolate-maker says we're running out of chocolate.

Born at 23 weeks, 'Chopstick Baby' survives first week

A baby who was born at 23 weeks has survived her first week of life outside the womb.

Manic stations: the nesting instinct in pregnancy

It might sound like temporary insanity, but almost obsessive nesting as you near your due date isn’t uncommon – even if you’re not usually a particularly clean person.

How a baby can survive alone for days on end

The baby found abandoned in a Sydney drain may have been alone for up to six days without being fed, leaving many asking how he could have survived.

When it begins to look a lot like Christmas

A child's excitement at Christmas time is a beautiful thing, but one dad ponders whether his toddler daughter is getting into the festive mood a bit too soon.

Hospital lets dads the experience some of the pain of childbirth

A new experience is radically altering men's views of childbirth.

Italian doctors questioned over formula bribes

Italian police have placed 12 doctors under house arrest on suspicion of promoting baby milk formula over breastfeeding.

Heartwarming prank gives single mum the house she was hired to clean

Cara Simmons arrived at work to clean a large and beautiful house in time for a party planned for that evening. It was soon hers.

Those special moments of sibling bonding

Every now and then your child does or says something that is truly memorable.

Why we should stop telling new parents to 'enjoy every moment'

A few weeks ago, some dear friends of mine had their first baby. As the proud dad texted me a picture I had to fight the natural instinct to say “Enjoy every moment!”

Baby monitor footage posted online

Footage of Australian babies and children sleeping in their bedrooms are among the images on a Russian site showing live feeds from thousands of homes and businesses around the world.

Did this new dad really hit on his wife's midwife?

Was there really a man who was actually there by his wife’s side as she laboured and gave birth to his child, all while he was making what he perceived to be meaningful eye contact with a midwife?

Keep calm and ignore the Tantrum Trolls

Tantrum Trolls are a small but growing species of predatory bottom-feeders who delight in picking on parents at their most vulnerable.

It's okay to never 'get over' the death of a loved one

The death of children, siblings, and parents has long term impacts on the rest of our lives.

What Mark Latham needs to know about depression and motherhood

Love has nothing to do with mental illness. But love may drive a mother to do something about it.

'We're just trying to keep our child alive': life with FPIES

We have a beautiful seven-month-old son, and his allergy rules our life.

Transgender dad breastfeeds his babies

A transgender man who breastfed his first baby - despite having his breasts removed as part of his transformation from female to male - has now had a second child.

Couple face $1 million medical bill and bankruptcy after babymoon birth

A Canadian couple were slammed with a million dollar medical bill after their daughter was prematurely during their babymoon.

Cigarettes, junk food dominate supermarket sales growth

One in every five dollars spent at supermarkets goes on cigarettes or junk food, according to industry data.

Teacher under fire for breastfeeding in class

There is no doubt mums have a right to continue breastfeeding after they have returned to work, but one teacher in the US has taken it to the extreme.

Win a family pass to Disney Live!

We have 4 family passes to give away to see Disney Live! presents Three Classic Fairy Tales, touring Australia this December/January.

Download now: Essential Kids Activity Finder app

Got bored kids? Quickly find the best activities for kids wherever you are in Australia with the Essential Kids app.

 
Advertisement
 
Advertisement
 
 
 

What's hot on EB

Join PADDINGTON on the red carpet!

To celebrate the release of PADDINGTON, we are giving five lucky winners the chance to win a family pass to the exclusive Australian Premiere in Sydney on December 7!

The tragedy of losing a favourite teddy bear

We were green and uninitiated, perhaps a little naïve when it came to the favourite toy responsibility.

Video: Baby sniffs beardless dad to make sure it's him

She looks him up and down and then touches his chin, but baby Lindsey still isn't sure this clean-shaven man is her dad.

It's possible to workout while pregnant

Medical experts say intense fitness routines can be done safely during pregnancy - if the mums-to-be follow some guidelines.

What parents really want for their kids

Are our hopes, dreams and expectations for our children what they really need?

'I had a feeling something was seriously wrong'

Before even giving birth, Katie Myers' maternal instincts warned her something was wrong with her baby.

When your pregnancy causes a relationship rift

Some dads-to-be don't miss a beat when their partner is pregnant; others struggle with a range of issues and can become withdrawn, right when their support is needed most.

Couple uses group photo trick to announce pregnancy to loved ones

Katharine and Kris Camilli devised a clever trick to immortalise their family and friends' reactions to their exciting pregnancy news.

Why Tracey Spicer has given up make-up

"After 30 years on television, I had become what I despised: a painted doll who spent an hour a day and close to $200 a week putting on a mask."

Knowing you are one of the lucky ones

I am secure, confident and strong, but the responsibility of protecting my children can almost bring me undone.

Why I am so emotional now I have kids?

There are so many ways in which parenthood changes us as women, but one of the most noticeable, for me, has been the changing state of my emotions.

Baby survives despite sharing womb with 'foreign body'

Baby Maia was conceived against the odds, only to find she was sharing a womb with an ominous "foreign body".

Video: Baby shows dog how to jump - or vice versa

They say dog is man's best friend, but this playful pooch seems to have chosen a jumping baby as her number one buddy.

10 ways to soothe a crying baby

New paernts can get frustrated when their newborn gets fussy and can't settle down. When you're feeling overwhelmed, try some of these simple tips to help soothe your baby.

20 baby names that are becoming more popular every year

The data-lovers at nameberry.com have been at it again – this time, they’ve discovered the names that are continually rising up the ranks, ready to take out some top spots in the next few years.

10 great meals to make for new parents

Ideally, you want to give food that isn’t expensive to make, isn't too difficult to create, and freezes well; stews, bakes, soups and pasta sauces are perfect.

Weird pregnancy products

Some pregnancy products come to market and are just awesome. Others just leave you scratching your head.

Carers admit to force-feeding children

Christa Engles was changing her baby's nappy when tragedy struck.

 

How many weeks til Christmas?

On your To-Do list

Get the "Santa" shopping done without the kids in tow.

 
Advertisement
 
 
Essential Baby and Essential Kids is the place to find parenting information and parenting support relating to conception, pregnancy, birth, babies, toddlers, kids, maternity, family budgeting, family travel, nutrition and wellbeing, family entertainment, kids entertainment, tips for the family home, child-friendly recipes and parenting. Try our pregnancy due date calculator to determine your due date, or our ovulation calculator to predict ovulation and your fertile period. Our pregnancy week by week guide shows your baby's stages of development. Access our very active mum's discussion groups in the Essential Baby forums or the Essential Kids forums to talk to mums about conception, pregnancy, birth, babies, toddlers, kids and parenting lifestyle. Essential Baby also offers a baby names database of more than 22,000 baby names, popular baby names, boys' names, girls' names and baby names advice in our baby names forum. Essential Kids features a range of free printable worksheets for kids from preschool years through to primary school years. For the latest baby clothes, maternity clothes, maternity accessories, toddler products, kids toys and kids clothing, breastfeeding and other parenting resources, check out Essential Baby and Essential Kids.