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




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

 

We can reduce gender inequality in housework – here’s how

Women shoulder the time-intensive and routine tasks - and they're also more likely to do the least enjoyable tasks like scrubbing the toilets versus washing the car.

Is it okay to reward children with food?

Does giving children food as a reward turn them into emotional eaters?

Exhausted mums share their 'sleepy selfies'

Two photos of mums have shown the world the physical impact of exhaustion in all its frazzled glory.

How to tell a million people: 'We're Having a Baby!'

Pregnancy announcement videos have become so popular they're becoming businesses all their own, with YouTube compilations, Pinterest pages and morning television segments.

The new family holiday: the maternitymoon

It's an idea that makes some people feel excited, while others shudder at the increased difficulty.

Mum's instinct busts hospital protocol

A terrifying car crash that left Danni Bett lying in hospital in a neck-brace wasn't enough to stop her from breastfeeding.

Mum shares pic of Gordon Ramsay's baby doppelganger

A Welsh couple have realised their newborn has a striking resemblance to a certain celebrity chef.

Photographer's charming photos of son's adventures with his toy truck

An adorable toddler and his toy truck in a photo series that'll melt your heart.

Do you hide your emotions from your kids?

I want my children to grow up and know it's okay to feel strong emotion and to display it. Vulnerability and imperfection do not equal weakness.

My in-laws snubbed our wedding

For your own husband's parents not to come to your wedding is an utter embarrassment.

Teenage boy has foetus removed from stomach

A teenage boy has undergone surgery to remove a foetus, complete with hair, legs, hands and genitals, removed from his stomach.

Your one-year-old is more creative than you might think

Even one-year-olds can be very exploratory, experimental and creative.

Researchers claim controlled crying 'does no harm'

The short and long term consequences of controlled crying are under the spotlight with new Australian research suggesting no harm results from the practice.

The pain of teething

If the tooth fairy takes teeth away, it must be something like a goblin who brings them in the first place.

Henry, 3, had a tummy ache. Within hours he was dead

Three-year-old Henry died in February this year, just a few hours after falling ill.

Husband shot obstetrician who saw wife naked

A Saudi man has been arrested after shooting the male obstetrician who delievered his baby because he was unhappy the doctor had seen his wife naked.

This 6-month-old just became 'the youngest water-skier'

First, baby Zyla tried her trick on cushy, beige carpet.

The bedtime bottle: will it really make your baby sleep?

How often have you been told "Just give your breastfed baby a bottle of formula at bedtime to make him sleep"? But does it work?

Why new mum Anne Hathaway cried at the gym

She might be a Hollywood superstar, but the gorgeous Anne Hathaway feels just as self-conscious as other new mums trying to get back in shape after having a baby.

An intimate story of infertility, told from a man's perspective

In a moving 3000-word Facebook post, Dan Majesky has shared a painful journey of infertility, with a big surprise at the end.

Does this photo offend you?

Facebook has come under fire after banning an ad featuring Tess Holliday, a plus-sized model, wearing a bikini.

Baby boy's birth filled with joy and sadness

It was a moment filled with joy but tinged with sadness. 

 
Advertisement
 

Top 5 Articles

Advertisement
 
 
 

What's hot on EB

The babies who are one in 70 million

Bethani Webb was excited to find out she was pregnant, but the first time mum did not realise she was carrying four babies not one.

Cafe offers breastfeeding mums a free cup of tea

A Sydney cafe is offering breastfeeding mums free cups of tea in a bid to show support for the right of women to nurse their babies wherever they choose.

To snip or not to snip? When the decision is not clear cut

Jamie Oliver, who considered a vasectomy, is to be a father again. A fellow dad reflects on his own decision 11 years ago

Doctors stunned by rare twins born almost six weeks apart

To everyone's surprise, Kristen Miller "kept doing better each day", keeping her second baby safe.

Baby book ideas for modern parents

Before my son was born I was given a lovely baby book full of blank pages waiting to be filled with weights and heights and first words.

The adorable smile of a baby seeing his mum clearly for the first time

There is no doubt seeing their child smile for the first time is an unforgettable moment for parents everywhere.

Mum tells how toddler 'nearly hung himself' in cot mishap

When Alison Johnson put her 18-month-old Caleb down for a nap, she had no reason to believe her son was in any danger.

Babies are still switched at birth? Yes, it can happen

All my panic and tears aside, my biggest question looking back is about the kind of security measures used in the maternity ward.

Doctors slammed for taking selfie with newborn

Everyone who visits a mum in hospital in the days following childbirth wants to get a photo with the new baby.

ergoPouch Twosie Sleepsuit for winter breastfeeding

Finally, there's a way to keep warm while breastfeeding through winter.

Health check: How long does sex 'normally' last?

What to do with this information? My advice would be to try not to think about it during the throes of passion.

When breastfeeding sucks: fixing common problems

From niplash to tight boobs, biting to milk supply issues, Pinky McKay looks at common breastfeeding issues and how to solve them.

10 things I've learnt in my first six months with twins

Six months on we're all still alive, and the more we get to know each other the easier the days become.

Mum's loving kiss leaves baby fighting for life

Kirsty Carrington thought nothing of giving her newborn son a kiss, little did she know it would leave the baby fighting for life.

When doing chores is your new 'me time'

After children, 'me time' looks a little different.

Get going: 14 travel strollers for families on the move

A stroller can make or break travelling with a baby or toddler. Here are 15 great single travel stroller options.

10 ways toddlers are terrific

It always pays to remind yourself of how terrific toddlers can be - they're little like this for such a short time

 

Vintage Toys

The toys of your childhood

Take a trip down memory lane with these vinage and retro toys that you may have had in your childhood or your parent's childhood.

 
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.