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Damian
DOB: May 30, 2001 Unbalanced 11/22 translocation (Emanuel Syndrome) SOUTH AMERICA - Laura
Munoz I
cannot tell
the story of Damian without telling first
about Javier. April,
27, 1996.
The third of our boys was born.
Nothing could tell
there was something wrong.
Out of an absolutely normal pregnancy Javier was delivered... he
could not breath on his own.
Everybody rushed from one place to another.
I was shocked, my body could not stop shaking, could not understand
what was happening but new it was very bad.
They put me to sleep while Javier was taken to the NICU, where was
connected to mechanical ventilation.
Once in my room our pediatrician said he had a severe diaphragmatic
hernia. The
surgeon said finally he
could not operate, my son had no chance of surviving it was a very
big hernia and had not developed his left lung. I
must tell that two weeks before my doctor had said, we had to give an end
to the pregnancy, we had reached 40
th week and
no signs of labor.
Something inside me felt an indescribable feeling of horror. I did
not want him to be born, I wanted to keep him inside me.
Without understanding this stupid feeling I wrote my sister in
Mexico and said:
everybody judges me, I am so sad because Javier has to born
and I can’t explain my feelings but suddenly I feel like being born is
the same as dying.
Years have past now and I have the strong feeling moms, while
pregnant have a deep connection with their babies. I
could never hold Javier
against my chest while alive.
We were very stressed
when he was at the
intensive
care unit and while
I was at home, he died. I
very big wound was left in my heart , still I cry for him in special
moments . A
month later and asking for his karyotype, I was told he had a genetic
problem................................. and on top of this news that I
had inherited this, because I was a carrier of a balanced translocation. A
second grief came over me.
I couldn’t let go the idea of being mom once more.
I felt this terrible need of holding a baby, breastfeed, cuddle.
And with this news I felt this chance had come to an end.
I felt very miserable for that .
It sounds silly now, I already had a nice family, but I didn’t
want anyone else to tell me it was better I had no more babies.
I wanted to happen when I decide it. Grief
over grief and still the milk in my breast did not stop coming, like
crying for his absent owner.
Javier’s room stood just as if he was coming for many months, I
was not able to put things away. Then if it had been on my hands I would
have died. But
life keeps on going and I was surrounded by love.
My husband, more worried
for me than for his own loss gave every effort of him for me to
recover.
Finally I found the light.
I can now look backwards and think on my boy with love.
I learned many things..... A
year later God surprised us with a beautiful girl.
We adopted Paloma.
Damian Among
the things I learnt is that you don’t plan many things, they just happen
and you must face them as they come.
We have decided
after Javier not to have more children, but in spite of all... on
Sept. 2000 I new I was pregnant.
I ended in a deep depression.
All my fears had resuscitated.
I was not able to go through the same experience.
Why should I go through this again?
I prayed so much to God I didn’t want to be pregnant, and then...
that I
wanted to have a healthy child, but none of what I prayed happened.
Week by week as they passed I felt more desperate.
I decided to have a karyotype done, and the result: an unbalanced
translocation.
I was traveling to hell.
All Drs, said there was no chance
for Damian, for sure he was going to die after his birth.
There are no person alive with this genetic condition, they said.
Still
as a pregnant mother
I felt
so sad for my boy.
I wanted so much to love him but couldn’t find this feeling of
love inside me.
I was so scared, how can you love at the same time that you must
let go....I felt responsible for him, I had to do my best but love
couldn’t come.
That made me feel so bad with me.
I had never left one of my children alone because they were ill,
moreover every time I had one of my other children ill I took more
care for them , so why shouldn’t I do
it for this boy?
Just because he hadn’t born?
I wonder why society asignes different values to people if they are
in or out their mothers.
I had to take care of him but felt sad, depressed, scared... death
walked by my side
like a shadow.
On top of all I was alone, my husband and I had taken different
roads for the same experience, I
found a shelter in myself and he did in his work.
Never felt so lonely. So
lack of support, so lost. The
30th of May 2001 was the day planned for Damian’s arrival,
and there
we were like two stranger waiting for what it was to come.
And my little Damian was born...
he looked
so well, he seemed
to be so normal.
I couldn’t believe what was happening..
He went for many exams.
Encephalic echo – normal, cardiac echo, just a small inter
auricular communication, that was giving no problem.
Kidneys : normal.
In the small things he had low weight, micrognathia, iris coloboma.
In his first month it was very difficult for me to breast feed, but
with lots of effort I did.
He had lots of trouble for swallowing, sometimes turned blue, but
nothing serious.
1 month later the geneticist said this children could live but
were very handicapped and very retarded in all aspects.
I cried a lot but since then -
never again.
I have learnt that even though their might be common things every
child is a world on his own and
I have to look just for what Damian is doing and worry when is
needed. Not for
what could happen and for statistics.
Since then I live much more happy. Damian
has grown up so much and he has been to some urgencies.
I have my respects to ear infections and larynx obstructions but we
are getting along very good. He
was diagnosed deaf since month 3 and used aids until month 9, then he
started crying every time we turned on the aids so went for a new
evaluation and found out he was hearing much more.
Now he can hear very good, never used his aids again. At month 1 he
was diagnosed – multifocal epilepsy, was in phenobarbitol for one year
and since then all the EEG have turned out normal.
He has not presented seizures since then. He
is a very nice little boy, enlightens our family with his laughter and
happiness.
My husband has found lots of love in him and are very good
partners. He
works a lot in his physical therapy, occupational therapy speech therapy
and all what his mama thinks he must do to rich other goals.
He is making lots of efforts for walking, seats very good on his
own, loves to draw and paint , says some letters and bla- blo- mamam ,etc.
what
he loves more is music and playing with his brother Daniel. I
must say that this two kids of us have turned our lives up side down, we
have cried and we have laughed but most of all we have found what is
really important in life. Written by "The mom" Laura |
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Latin America / Spanish inquiries -
Laura Munoz, Robinson Crusoe 1209, Las
Condes - Santiago, Chile tel: 02-3251262 EMAIL: