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Westmead Childrens Hospital
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#1 DamiansMama

Posted 12 November 2012 - 10:51 AM

My nephew was born with some severe physical "deformaties". Actually I'm not even sure I would say deformaties as he is a completely normal child (not to mention the love of our lives) bar the adhesions. A little background...

You see. He was an identical twin. His brother died at approx 19 weeks and my SIL carried to 33 weeks. We really did not know what we were facing but knew there was something wrong. He entered this world the normal way but was immediately taken to neo-natal. Doctors were initally baffled by his condition. He was born with 13 open wounds all over his body. The major one on the top of his head. As the skull had not formed, we could see the membrane  sad.gif . He stayed in hospital for over a week, but was good to come home while he healed.

SIL would sit up late in the night/morning knitting little beanies that could tie under his chin so to protect his wee little head. Heal it did, but unfortunately he developed a callus and the skin surrounding that area (the size of a baseball), was like a burn victim and therefore has no hair.

Two weeks ago, he had the first operation to surgically repair this area. He currently has the nickname Frankie (making some light of the situation) - due to the shape of his head. It will triple in size over the next coming months and we watch him constantly. No jumping, pushing, etc but pretty hard when you are a 3 yo that thinks he is Superman wink.gif

I just want to thank our Doctors, Nurses and all those behind the scene amazing people who make this even remotely possible. You are changing the life of one beautiful little boy and I will be forever grateful.

Edited by DamiansMama, 12 November 2012 - 11:28 AM.

#2 Handsfull

Posted 12 November 2012 - 11:00 AM

Totally awesome post about your nephew.  

It is truly amazing what the medical profession can do to help our children.  

We too have been blessed with medical intervention, if I can say that! and my beautiful girls are here today because of it all.

Hope the operations go well and he is well on the way to recovery.

Way to go.

#3 DamiansMama

Posted 12 November 2012 - 03:01 PM

QUOTE (handsfull @ 12/11/2012, 12:00 PM) <{POST_SNAPBACK}>
Totally awesome post about your nephew.  

It is truly amazing what the medical profession can do to help our children.  

We too have been blessed with medical intervention, if I can say that! and my beautiful girls are here today because of it all.

Hope the operations go well and he is well on the way to recovery.

Way to go.

I agree!! Hope your little girls are giving you many happy life long memories.

#4 DamiansMama

Posted 19 November 2012 - 10:48 AM

Not sure whether anyone is reading, but my little nephew has developed a nasty infection. ATM they are treating him with anti-biotics intravenously, will monitor him for 24 hours, if it doesn't clear, he is back into surgery to take out all the saline balloons which have been inserted into his head and then start from scratch, months down the track.


#5 ozbilby

Posted 19 November 2012 - 11:18 AM

Poor little man, I hope he gets better soon.

#6 Farmgal

Posted 19 November 2012 - 11:42 AM

One of my Twin boys was in Westmead for ten weeks after he was born. We could not have been happier with the support we received from the children's hospital. Two operations down and he is a new boy.

I wish your nephew all the best, he is in great hands. I hope the infection clears ASAP.

Thinking of him and his family.

#7 Therese

Posted 19 November 2012 - 12:16 PM

I hope the infection clears up quickly sad.gif

#8 DamiansMama

Posted 19 November 2012 - 12:48 PM

Thank you ladies and I really do hope this infection passes. We should know a little more by the end of the day. What we do know is that he will be in hospital for a while, but it is the best place for him.

#9 Therese

Posted 20 November 2012 - 12:59 PM

How is he today ?

#10 VJs Mummy

Posted 29 November 2012 - 08:17 PM

Hoping your little nephew is better sending my well wishes his way

#11 DamiansMama

Posted 03 December 2012 - 09:42 AM

Just a little update: Unfortunately my nephew had to have surgery to remove all saline balloons as they could not contain the infection. They managed to reduce the size of the original scarring and all but a 20c coin size remains. He will however have the operation once again in 12 months time. Not ideal, but it is what it is.

Thank you for checking in and apologies for not coming in earlier.

#12 ~ky~

Posted 05 December 2012 - 01:28 AM

I'm sorry not all is going to plan, but am glad your nephew is getting such incredible care.

My daughter, Ruby spent all of her life at Westmead Childrens .. we could not fault the love and care that was given to her during that time. She was treated gently with love and respect as were we.

I hope all goes well in his future surgeries  original.gif

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