[tri-med] Re: My Story and My Thanks

Hi Irene,

Sorry for taking a while to repsond.

I am only 33 years old so opted not to have an amnio done when I was 
initally pregnant as I did not fall into a high risk group and I had a 
previous successful pregnancy/birth. After receiving the diagnoses at week 
20 we again opted for no invasive teatments as I did not want to risk a 
miscarriage of the twins and I also thought that whatever the outcome I 
cannot change Zahra's condition. The doctors believed she had T13 due to the 
ultrasounds. They said that with all her facial abnormalities and the 
presumed severe cleft lip/pallette that these were all highly suggestive of 
this disorder, thus our journey began into T13.

After the negative result came back from the Cord Blood test we just 
presumed the abnormalities were from the 'Holoprosencephaly' as these are 
all symptoms as well. However after emails from other tri-med users I 
believe that maybe this Cord Blood Test was inaccurate due to the minimal 
cells they tested (15). Now we shall never know for sure either way.

Cheers
Kerry


>From: "Irene Smith" <67.irene@xxxxxxxxx>
>Reply-To: tri-med@xxxxxxxxxxxxx
>To: tri-med@xxxxxxxxxxxxx
>Subject: [tri-med] Re: My Story and My Thanks
>Date: Wed, 12 Jul 2006 09:07:42 -0400
>
>Congratulations Kerry!  I remember your story well.  Your story is amazing
>and is one that should be told again and again.  I can't begin to even tell
>you how many stories I have heard of incorrect prenatal diagnoses.  Like
>your Zahra, my Caroline also had some things diagnosed prenatally that were
>wrong, and some that were right.  It scares me to death to think of those
>who choose not to continue on with their pregnancy, only to find the 
>doctors
>were wrong.
>I did have a question, how did they diagnose T13 prenatally?  Was it u/s or
>amnio?  I find it very interesting that they were wrong about that.
>
>Congratulations again and thank you so much for providing us all with an
>update.
>
>Irene
>Christina (4), Caroline (3 with partial trisomy 17p) and Kallie (1)
>Caroline's site:  http://www.caringbridge.org/visit/carolinesmith
>
>On 7/12/06, Kerry Abdallah <twinmummy15@xxxxxxxxxxx> wrote:
> >
> > Hi,
> >
> > My name is Kerry and I am an Australian who is living in Singapore with 
>my
> > husband and 3 year old daughter. I posted to this board a few months ago
> > when I was just 20 weeks pregnant. I was on a personal quest for
> > information
> > on anyone who had a twin pregnancy where one child was diagnosed with 
>T13
> > and Holoprosencephaly. I have now given birth and wanted to share with 
>you
> > all the outcome of my journey.
> >
> > If you recall one twin was prenatally diagnosed with Trisomy 13,
> > specialists
> > told us the following?..Zahra firstly had Holoprosencephaly. This is a
> > disorder caused by the failure of the forebrain to sufficiently divide
> > into
> > the double lobes of the cerebral hemispheres. The result is a 
>single-lobed
> > brain structure. Secondly, she was diagnosed with Microcephaly, which is
> > an
> > unusually small sized head. These two problems resulted in Zahra having
> > facial defects such as her eyes were not spaced apart; they were only
> > situated 3mm apart in the middle of her face. Her nose was placed above
> > her
> > eyes and she had a severe cleft lip. The remainder of Zahra's body and
> > organs appeared to be normal. My husband and I after much consideration
> > continued with the pregnancy and let nature take it's course.
> >
> > On the 15th May 2006 we were pleased to announce the arrival of our two
> > beautiful baby girls, Raine and Zahra. Officially the girls arrived five
> > weeks and three days earlier than they were supposed to and about three
> > weeks later than I had hoped! Although small in size they both appeared 
>to
> > be physically strong and ready to face the world. Even though Zahra had 
>a
> > terminal condition and it was difficult to know how much time we would
> > have
> > with her we made the most of it.  One thing was for sure; she was a real
> > fighter and had within hours of entering our lives etched her way
> > indelibly
> > into our hearts. Raine was equally gorgeous and full of gusto.
> >
> > It had been a rollercoaster pregnancy and birth which saw us experience
> > every emotion from tremendous joy to deep grief and sadness. Sadly Zahra
> > grew her wings and passed away on 17th May at 12.34pm.
> >
> > Zahra was a strong girl who exceeded the expectations of all around her.
> > She
> > defied odds by surviving gestation and birth; she breathed on her own 
>and
> > consumed her mother's milk. Doctors could only marvel at her pure
> > determination to stay in this world and at her resilient character when
> > they
> > tried to make her do something she didn't want any part in!
> >
> > When Zahra was born she was placed immediately onto her mother's chest
> > where
> > it was revealed that she did not have some of the problems that the
> > Doctors
> > had described in the ultrasound. Zahra had a perfectly rounded mouth,
> > although very tiny, there was no cleft lip/palette. She did have a
> > Probiscus
> > which appeared from her forehead but just looked like a nose in the 
>wrong
> > spot! She had two eyes with very long lashes, a Family trait but was
> > unable
> > to show us the colour, we are still arguing over whether they would have
> > been blue or brown.
> >
> > Zahra had an oval shaped face and a very long body. She was born breech
> > and
> > had the usual hip dislocation as with all breech babies. Her body from 
>the
> > neck down was perfect, her heart beat as strong as a healthy newborn and
> > her
> > lungs were fine. She did wees and poos like all babies and had all her
> > fingers and toes. She could hear and responded to her mother and 
>father's
> > voice, turning her head to the direction they were in. She was also
> > comforted by us, relaxed and happy when in our arms or cuddled close to
> > our
> > bodies.
> >
> > Zahra's cause of death was recorded as 'Holoprosencephaly', the 
>forebrain
> > not dividing. She was born without nostrils which made it very hard for
> > her
> > to get enough oxygen. This is ultimately what caused her passing. All
> > newborn babies breath through their nostrils, they do not know how to
> > breath
> > through their mouths for some time, their tongues roll backwards 
>blocking
> > the airway. Zahra upon birth had a very small tube placed in her mouth 
>to
> > open the airway and as a result she was able to breath on her own as her
> > heart and lungs were exceptionally strong. Zahra coped fine with this
> > arrangement for a couple of days but as it is unnatural to have a tube 
>in
> > your airways she developed secretions that started to block the tube and
> > would eventually cause her discomfort. After all details and options 
>were
> > taken into consideration we removed the tube and allowed Zahra to decide
> > on
> > her own destiny.
> >
> > With Zahra in our arms she continued to breath on her own with no tubes
> > for
> > just over two hours, once again amazing the nursing staff. Her heart was
> > just not going to quit quite so easily and she only started to 
>deteriorate
> > in the last half an hour. As we hugged and kissed her and Raine we
> > cemented
> > our love for our twin girls and formed a bond that can never be severed 
>by
> > time or experience.
> >
> > After being told of Zahra's condition in week 20 of my pregnancy, we
> > thought
> > long and hard about the options put before us.  The decision we made is
> > one
> > we will relish forever. In the two days she spent with us Zahra touched
> > our
> > lives in ways we could never imagine possible. We accept that she has
> > physically left this world but her spirit will live within our hearts
> > forever.  Her memory will never fade. We will always be the parents of
> > adorable twin girls.
> >
> > A big thankyou goes out to you all for the support you all give. I found
> > your encouragment and advice ressuring during my journey and found your
> > help
> > to each other comforting. It also helped prepare me in many ways for the
> > arrival of my girls. Please continue in your work of educating and
> > supporting people who are in similar situations, you are all a Godsend!
> >
> > PS?... We did have Zahra's Cord Blood tested for any Trisomy's and guess
> > what?..the results came back negative. She did not have Trisomy 13 after
> > all
> > just the abnormality of the 'Holoprosencephaly' and it's related 
>symptoms.
> > Just goes to show that the medical profession isn't always right!
> >
> > _________________________________________________________________
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> >                   Families Helping Families On-line
> >
> >
>
>
>--
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>

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