The Drostens: A few photos

Wednesday, July 14, 2010

A few photos

Noah after his first operation, in bed laughing at his favourite "In the night garden" DVD, surrounded by Maka Pakka!

Noah decided not to sleep before going to the hospital for his stent change, here's his happy face at 09:00am!!

As it was Noah's birthday, he asked that we take some treats in for all the doctors and nurses that care for him. They were very happy to join in with the celebration. Thanks Zuzanne for taking the time to make these yummy treats :)

Noah in his Birthday suit!

1 comment:

Lorraine said...: oGreat pics :-); July 20, 2010 at 8:49 AM

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About us

Hi,

We are the Drostens:
Louise Drosten-Bazzard: My wife, and co-author.
Thijs Drosten: Me, the one that does most of the writing for now.
Noah Aleidus Glyndwr Drosten: Our son, born on the 9th of july, 2008. He is suffering from a very rare thing called CHAOS, congenital high airway obstruction syndrome. Most of this blog is about him as he is the focus of our lives. He has had a very special birthing procedure, called EXIT, and he will have to live with a little tube in his neck to breathe through. He also has a PDD/NOS diagnosis, he is on the autism spectrum.
Daisy Ohana : Our dog and source of fun. (Ohana means family!)

Call to all CHAOS parents

Hi parents.
We would like to get into contact with other parents with a CHAOS child. Particularly if you are in Europe. We are active on facebook, where we have a chat group of 15 parents with children that have CHAOS. Please leave a comment and we'll get in touch.
Check this post for more information

Thank you very much!

Here are the other CHAOS children and for some, their webpages:
Tommy (Carepages, registration required)
Kalmin (Carepages, registration required)
Grant (Carepages, registration required)
Faith-Ann
Matheus
Pedro
Coby (Caringbridge, registration required)

Medical Terms

CHAOS - Congenital High Airway Obstruction Syndrome. Basically a blockage in the top of the airway of an unborn baby. Since the lungs make a lot of fluid in unborn babies this leads to swelling of the lungs, fluid retention in the baby's body and other side effects. See also: http://www.fetalcarecenter.org/assets/0/190/5081/5091/bae6f17d-8bf0-4554-ad2a-dd4fb5e0fb73.pdf

EXIT - Ex-Utero Intrapartum Treatment.
A very special type of caesarian (keizersnee) where the baby uses mommy for life support while half born. This allows the doctors to operate on him, and make sure he can breathe properly before the umbilical cord (navel streng) is cut. To make sure the mother does not go into labour, this is done under full general anesthesia (knocked out completely). Also special medication will prevent breaking down of the placenta.
See also: http://www.fetalcarecenter.org/fetal-surgery/surgical-procedures/exit.htm

Tracheostomy - A hole in the airway, usually located below the larynx (voice box, stembanden).
This hole is used to put in a small plastic tube, through which he can breathe. This tube will need very close monitoring in babies, as it can easily get blocked. Also it will prevent the baby from making noises as no air flow past the vocal cords.
For Dutch information, check: vrienden van kinderen met een tracheacanule. Especially the page 'Tips voor familie en vrienden' offcourse :-) .

Probable Causes: A genetic error on chromosome 12Q. This happened when Noah's first cells where dividing, as only a part of his cells have this error. The genes involved are 3, 5 and..... more info to be added later.

The Drostens

Wednesday, July 14, 2010

A few photos

1 comment:

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