Hi everyone,
The doctor in Leiden told us a bit about what to expect and when. He hopes that they can perform the exit-procedure in week 36 of the pregnancy, which will be almost full term. They have already recruited a few members for the team, among which a fetal heart and lung specialist, and a specialist on fetal anaesthesia, and our own doctor who is an expert in fetal care as well. All of these people are among the best in the Netherlands so we are in very good hands.
In two to three weeks we get to talk to the entire team, and will get to know more about the care our little man will need after birth.
Completely unrelated news: both our new bed and our new car have arrived. The bed today, and I can pick up the car on friday. Offcourse this means we will have a bed too many (unfortunately not a car). So if someone needs a double bed, let us know. I have given Bas first right, but if no-one wants it it will go to the kringloop most likely.
Thijs
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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!)
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)
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.
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.
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3 comments:
Tumbs up for 36 weeks. We could even give birth on the same day. That would be double exciting and happyness. Good luck and still kicking (do you have already blauwe plekken yet, Louise? from the kicking, I know I'have)
judith en Tom
Hey Tom and Judith,
no blauwe plekken yet - but mighty uncomfortable with the little man kicking my ribs! That would be so cool if we delivered around the same time - they could almost be twins!! ;)
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