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June 14, 2007
In November 2006 our world was upside down when the doctors told us that our
unborn baby had Trisomy 13 ( Trisomie 13 ).
We got all this awful information from the doctors and our first reaction
was, that it probably was best to terminate the pregnancy. But we also
thought that before we made our final decision; we should gain information
from the internet and other media. And we also asked ourselves: Does the
Lord agree with such a decision ?
Fortunately we found the livingwithtrisomy13 - internet site and became to
know there was hope !!
And this hope and the pictures of the wonderful children on the site, who
are living with Trisomy 13, made our decision much more easier. These were
happy faces of living children. This made us very sure: we wanted to carry
to term; because all this was worth it.
And I must say when we decided to carry to term very much weight fell from
our shoulders and I could actually enjoy my pregnancy again.
On the ultrasound our daughter was 2,5 weeks behind in growth, had
obstructions in the intestines, obstructions in the kidneys, a severe heart
malformation (DORV: the vessels were not on the right heart chamber and she
had a hole in the wall between the heart chambers) a club foot, a fluid
space present in the small brains) and my placenta looked very weird.
By the way: I asked the doctors if our daughter was comfortable despite of
all her difficulties; but they ensured me that when a
baby is in the womb they don't suffer from any of these difficulties -
because the whole body is then still working on the mother. So that was also
very comforting; knowing our child felt good inside. And I must say we
always got that impression from the ultrasound - when we saw our girl
floating around and sometimes sucking her little hand.
So this also helped: why terminate if our child is comfortable right know ??
When we had questions we put them on the message board (of this internet
site www.livingwithtrisomy13.org). And also by reading all other messages of
this message board - we were learning more about the Trisomy 13 every day.
Our daughter was born on the 17th of February (about a month ago) and she
lived for 7 hours and 7 minutes. Of course this was a short life; but it was
all so worth it. We were able to love her and hold her in our arms. And now
she is in the most wonderful place you can imagine: in heaven with the Lord.
This knowledge also gives us very much strength and keeps us going.
When I think of it; in advance I could never dream this whole Trisomy 13
journey could be so rewarding.
Of course we would rather have a living child; but knowing she is with the
Lord right now - comforts us.
We have a two year old son (Kaj) and I enjoy him so much every day; I now so
much more realize this is such a wonderful gift: LIFE. And I am so grateful
for that !!
I have a beautiful slideshow about our daughter Fleur. & also another
slideshow that I made with some very meaningful bible-lines in it - we gain
much strength out of this. We showed both presentations on Fleur’s memorial
service.
You find both of them below by clicking the links:
* put your speakers on *
Flower presentation:
Photo slideshow of Fleur:
Much Love, God Bless,
Corine Osté-Blom (31 years old)
The Netherlands / Nederland
Update February 23, 2007
Yesterday we had Fleurs' memorial service. It was a really beautiful service
and we put a lot of our own input in it; so everybody present will keep
Fleur in his or her heart for a long time.
I write you this mail, because I want to thank each one of you for your
support in this very intense journey. Those supportive and comforting mails
helped us through ...
Unfortunately our Fleur couldn't stay with us longer than 7 hours and 7
minutes; but we enjoyed every single second of it. And we thank the Lord
that we got this precious time with her. We will never forget this ....
She never looked uncomfortable and slept in very peacefully and she's now
our little precious angel.
In the enclosure of this email you find a photo-slideshow of our time with
our little Fleur.
Thanks again for everything and I will never forget you people.
Corine
The Netherlands
- - - -
Sunday the 18th of February 2007
Yesterday at 17:33 h. our beautiful daughter Fleur was born. I really hoped
to carry to term; but the contractions started at 35 weeks.
Fleur; is the French word for flower.
We where very fortunate because she was born alive and breathing on her own
despite all of her difficulties. We kept her in our arms for 7 beautiful
hours - all this time she laid with us so peacefully and looked so very
relaxed - and then the lord decided to take her home.
Thank you all for helping us through this journey; we really feel it was all
so worth it ... This internet site and you parents gave us the hope and the
strength to carry to term and we are so very grateful we got to spend 7
amazing hours with our little one.
Much Love
Corine
The Netherlands
- - - -
 Prenatal Update - 16th January 2007
Yesterday we had an appointment in the hospital of
Utrecht again to have another ultrasound. I really had a good feeling about
it; because I was feeling very good lately and our child is still moving
very well in my belly.
But unfortunately besides the 'markers' which they
saw earlier they now also saw that the heart was enlarged, which means that
it is having rough times (but it was still working well ! (?). And the
kidneys now where white on the ultrasound, which also is no good sign.
About one month ago the heart and the kidneys
where the two things which looked just fine on the ultrasound and that
really gave me a positive feeling then of course. But knowing these organs
are also having problems this really made me sad and disappointed yesterday.
Now, one day later, I can think straight again and
try to get positive again. However some organs look disturbed; there are no
major organ malformations visible and that of course is still a positive
thing !
The growth of our child still has developed; it's
still about 2,5 weeks behind. But this did not get worse; this was also the
case 10 weeks ago.
And last time they told us the head of our child
was back in growth compared to the rest of the body. But now this was not
visible anymore.
Last time the density of the intestines was 3; and
now it was 2. So this also got a little bit better.
So some things got worse; but also some things
looked a little better.
We try to remain positive and hope our little baby
will remain in my belly for some more weeks to grow and get stronger.
I'm glad to have this internet site to get
strength from and share our story.
Leon & Corine
The Netherlands
- - -
My name is Corine, 31 years old and
I'm living in a small village in Holland (The Netherlands) together with my
husband Leon and my little son Kaj, who is 1,5 years old.
Right now I am 25 weeks pregnant; due date 24 march 2007.
Last week my unborn child was diagnosed (FISH method) with Trisomy 13 and we
are considering the option of carrying to term because the thought of
stopping the pregnacy makes us very very sad.
The doctors in The Netherlands (where we live) are not at all possitive
about Trisomy 13. But when I saw the happy looking children on your
internetsite my heart was breaking. We admire the great strengt of the
parents of these lovely children and hope and pray we will get strength the
coming time.
The soft-markers in my case are:
- very little fluid in my uturus
- the growth is 3 weeks behind
- rocker bottom feet
- small head shape - corpus callosum 14,5 mm (at 22 wks 6 d)
- a little fluid is present behind the small brains
- the intestines look white on the ultrasound - density 3 degrees (that
means something is not right there)
- there's a strange layer (lacunar; 33,6 mm) present upon my placenta (on
the side of our child), which seems to be filled with blood or some kind of
fluid -- The placenta is shown as a white layer on the ultrasound and right
on top of it you see an equally shaped black layer.
But the heart and the blood circulation to the heart look good and also the
kidneys look alright. Maybe that is a positive thing ??
The bloodcirculation to the placenta also looks alright but maybe the black
layer is disturbing something.
Last Monday we had an ultrasound again which showed that our child is still
progressing in growth and we noticed the baby looked very relaxed in my
uterus. We wanted to see if it is a boy of a girl but this smart baby kept
his or her legs crossed. At this sweet moments you can almost not believe
the diagnosis is right.
Much love,
Corine Osté-Blom
Leon en Corine
The Netherlands (Holland)
Web
Site
(link translates from Dutch)
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Translation
Ironman
for Kids - The Living with Trisomy 13 Community thanks Michael
Hennessey for helping to raise awareness for Trisomy 13 and other
related disorders. 
to help update the medical literature and to improve the quality and
availability of medical care. Tracking Rare
Incidence Syndromes (TRIS)