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So many times words are not enough to describe situations hard
to imagine. I will try to tell you, in simple words, the first months
of Darius' life.
Darius was born on 10 October 2006, after a 37 weeks pregnancy,
he weighed 3.300 kg and was 51 cm in height. He was considered born
a little earlier and, especially due to his mother's negative RH,
after only 7 days at home, he was hospitalized in Constantza County
Hospital for investigations. Everything started there!
The pediatrician recommended as the best in this hospital, was
superficial in her check-ups. After a short examination she concluded
that Darius had a severe heart malformation (true) and kidney problems
(false). Even when Darius' state was obviously deteriorating, the
doctors did nothing to help him, first of all because the hospital
material conditions in hospital were not appropriate. His doctor
went to holiday saying that if she finds him alive upon her return,
she will see what remains to be done.
The analyses revealed a sepsis infection (from his life in the
uterus) and a klebsiella infection, a nasty bacteria with small
chances of healing. The doctor also diagnosed Darius with the Fallot
Tetralogy, but this was also wrong. Since it took Darius too much
effort to breastfeed, the doctors set a nose tube to feed him through
and kept both methods of feeding. Though his parents had frequently
asked for Darius' transfer to Bucharest, to a better hospital, but
for one month the doctors considered that the baby was not in any
condition to travel.
November 30, 2006 - After several requests and the pediatrician's
return from her holiday, Darius was transferred to the M.S. Curie
Hospital in Bucharest, in the Critical Care Unit. As soon as the
doctors saw him, they first intubated and connected him to oxygen,
and secondly asked the mother angrily why she had arrived so late!!!
The doctors immediately they set a central catheter in the humeral
artery, in order for the medicine to be more easily administrated.
After much investigation, the diagnosis was DORV disease. To ease
his breathing the doctors performed a tracheotomy. With a bad general
status, infections still ongoing, oxygen dependent, Darius still
had to undergo the pulmonary banding. This surgery was possible
in a hospital in Tg. Mures. Getting things moving took a mother's
breakdown, (as she was tired of hearing the words "we will
see") and lots of phone calls, a fully equipped and assisted
ambulance to Brasov where Darius was taken over by a special team
from SMURD.
If in Bucharest the baby's caretaker was the mother who would even
perform some of the medical procedures (because of missing personnel
and insufficient budget), in Tg.Mures the mother had no permission
to be with her baby throughout the stay. She obtained information
about Darius secretly, from nurses who, as they were mothers themselves,
took pictures of the little boy with their mobile phones and showed
them to Darius' mother through the cracked door.
When the chief of pediatric cardio-surgery found out about Darius
carrying klebsiella, he had a real shock, since that meant a serious
disinfection as far as blood is concerned, but in Constanta County
Hospital, where Darius had contacted this bacterium, the cases are
probably more frequent.
February 8, 2007 - The pulmonary banding surgery was a success,
even though it was done without a cardiac catheter, as the doctor
hoped that his intuition would not be wrong. However, the hospital
conditions were not appropriate and Darius was once again transferred
to Bucharest. But a big step forward had been taken, as he was rid
of the oxygen mask. His lungs were able to function on their own.
Darius' frail body underwent a lot during this entire time, no
less than 4 catheter installments (it takes approximately 3,4 hours
to install it), on his jugular vein, and two times in the inguinal
area. He was so pierced that in Tg. Mures the doctors performed
a cropping on his right little hand.
August 8, 2007 - A little before Darius was 10 months old,
the doctors decided to unplug one of his nostrils that was plugged
from birth. Why so late? We will never know ... . What we know is
that even though Darius cannot hold his head or sit up straight,
that does not mean he is not developed; on the contrary: he is now
more restless and pulls his IV lines out and needs constant supervision.
The surgery was not a problem this time either. It meant freeing
his breathing paths, however he had to have a tube in the operated
nostril for the following 3 months (in order for the nostril not
to get plugged again) and in the other nostril he had the feeding
tube installed 9 months before.
When he was 3 months old Darius lost his breastfeeding instinct
and he cannot be fed with a spoon, especially since he cannot even
swallow his saliva. This, together with other "normal"
mucosities, is permanently cleaned by suction by Madalina, Darius'
mother. If we are to consider the gastro-esophageal reflux which
triggers vomiting episodes then we tend to understand why the doctors
maintained the nose tube for such a long time. Darius' small tried
body responded to the tube by a wound in his larynges which is supposed
to either go away in time or be operated on.
August 23, 2007 - Only when he was 10 months and one week
the stomach tube is inserted (a small tube in inserted directly
into his stomach for feeding) and this allows for one of the nostrils
to be released.
Though in the beginning Madalina wanted to stay in the country
for the correcting surgery which Darius can undergo when he is around
one year old, she now would like to go to a Western hospital where
her son, her only child, could be well treated. The current doctors
and means may be better but they still cannot compare to the ones
abroad.
It is not fair to have so many expensive tests and ultrasounds
during the pregnancy and have them not reveal severe fetal malformations!
It is not fair to be considered responsible for what is going on
with your child from a medical point of view! You are given the
instructions, you are made responsible for the mistakes made; sometimes
you get phrases like "you could be a nurse", all of these
make you wonder if it had not been better for you to stay home and
take care of your child as you know best, full of love and humanity,
something many lack
It is not fair to be treated as if people around you are awaiting
your death from one day to the other!
It is not fair to ask for help and not get it because there is
too little staff!
It is not fair for a child to be pierced looking for a vain while
there are better methods that last a longer time!
It is not fair to ask for something to calm your child down or
sedate him once he is out of surgery! The doctors should be the
ones to know that even when you are 10 months old you feel pain,
hunger and heat discomfort.
It is not fair to want your own death, yours and your child's when
you hear (unsolicited) opinions like "he seems to have neurological
issues also
". If medicine is being practiced by people
offering their own opinion, then most of us should be doctors.
What Darius is going through now can hardly be called a life, but
through the good will of good people things could change. People
who believe in the chance that Darius has have encouraged Madalina
to see about a surgery abroad. This is possible for a certain amount
of money, small for some people, huge for others, vital for Darius.
The
truth and seriousness of Darius' condition is GARANTEED BY 
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