What a frantic week it's been! We had an uneventful journey down to Leuven in Belgium, and after some wandering around the massive complex we finally mastered the booking in process and we were directed to the correct wing of the hospital. It was a very long day of waiting, testing and lots of questions. Finally we have a conclusion:
The baby is indeed showing early warning signs of distress, and so time is now of the essence. An experimental operation needs to be performed to attempt to save baby and this is of course not without risk. However, without this operation, baby cannot hope to continue.
The operation will be performed on Friday. Louise will still have the MRI in Leiden on Thursday, as all diagnostic information is of course going to be useful. Then on Thursday evening we will travel to Leuven to be booked in to the hospital. We don't have much more information regarding duration of stay etc. We will be busy phoning our doctors here in the Netherlands this week to find out more.
Due to our absence, the blog may not be updated for a while so please don't let the long silence worry you. As soon as we have access online our updates will be posted.
Wish us well, and please continue to think positively for us all.
Louise & 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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1 comment:
Dear Louise and Thijs
Please know the Lord is with you and many will be praying for all of you.
Cheers
Kenneth
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