Our story began in April 2013, when our youngest
son Kirill was born into the world. My pregnancy went very well, with only one
exception. My older son got sick, and after we visited the children’s clinic,
everybody in our family caught a very bad virus - including myself. For two weeks I
had an extremely high fever and was generally feeling unwell for more than a
month. At my final ultrasound, the doctors detected some placental
insufficiency, but at that time they felt it was nothing to worry about. At my
regular OB/GYN examination on April 29th, I was told that my baby was doing
very well. My doctor suggested that I visit the day hospital for an additional
check-up. But, due to a national holiday, the hospital moved the scheduled
appointment to May 13! The next day I was scheduled for a routine blood test,
fetal monitoring and a check-up at the day hospital. But unfortunately, fate
had other plans for us!
On April 30 at six in the morning, my water broke and 3 hours later our tiny
little Kirill took his first breath. His arrival came so fast - we didn’t fully
comprehend what had happened. Kirill was born at 32 weeks- he was 8 weeks
premature and weighed only 4.5 lbs. And he started to cry. His Apgar rating at
birth was 6/7 points. But due to his lungs being under developed, his condition
deteriorated and he was taken straight from the delivery room to intensive
care. At that point, an infinitely long 7 days commenced, when my unconscious
beautiful little boy underwent artificial lung ventilation and tube feeding.
Every day I was told that his condition was extremely serious. Each day the
hospital offered to baptize him right there, in the incubator. Every day I
would visit him in the intensive care unit and my heart would jump out of my
chest as I would look upon him and say: "My sweet, sweet baby boy, just
live! Together we can fight anything!”
And thankfully my prayers were answered! Kirill lived. However, this ordeal did
not leave him unharmed. The doctors diagnosis was: "Your son has suffered
brain damage. We cannot make any predictions." They explained the
diagnosis: periventricular leukomalacia, grade 3 ischemia, grade 3
intraventricular hemorrhage, hydrocephalus and microcephaly.
My world turned upside down. This was the most frightening thing that had ever
happened in my life. I could never imagine that this would happen to with us,
and we didn’t know how we were supposed to live our daily lives. How could I
help my little bundle of joy? What would we say to our family and friends? The
sense of hopelessness, despair and fear of the future was beyond words.
But as I watched my son struggle for life, I realized that I too, had to be
strong and do everything I could to help him!
Even though the doctors didn’t have much hope, Kirill seemed to be recovering
very well. He was gaining over 2 lbs a month, his head was growing, and that
meant that his brain was developing. He learned to hold his head, make baby
sounds, and smile. He was even trying to roll over. Considering the initial
prognosis, we could not have possibly been happier!
When suddenly we were struck again with another terrible diagnosis - Kirill had
developed the worst manifestation of epilepsy - West Syndrome! At 4 months of
age, Kirill experienced severe seizures and his improving condition started to
deteriorate. His development came to a complete stop. He has now even forgotten
how to do the things that he was already capable of doing.
Now our baby is 8 months old, and he cannot sit up or roll over; he is not
reaching for toys. He started smiling less, he cannot keep his head up as well
as he did previously, and he doesn’t react to sounds. We then received even
more troubling diagnoses - optic nerve atrophy and partial hip joint
dysplasia.
During the past long 8 months we've undergone 6 courses of treatment in a local
hospital, all with minimal positive results. We have applied for treatment for
Kirill in Moscow, but at the time of this writing, it has been more than 3
months, and much to our dismay, we have not been invited by any federal
hospital. Local doctors in Voronezh have already done as much as they can do to
the best of their ability and we’re thankful for their kindness. However, the
treatment that was prescribed to us, unfortunately has not helped, and our time
is running out. Every day takes us further away from our dream of seeing Kirill
walk, talk and lead a normal life! Time is the most precious thing with these
types of serious conditions.
I found a few foreign specialists who can help us; Professor Olivier Dulac,
President of the Scientific Council of the French Foundation for Research on
Epilepsy - a neuropediatrician cares for patients in his neuropediatrical
office in the Necker Hospital (Paris). His patients are epileptic children who
are not only from France, but from all over the world. He has agreed to see
Kirill for consultation and a detailed outpatient examination. In addition, I
have sent out inquiries to several major German centers for the treatment of
epilepsy and have received an invitation for a comprehensive review and
individualized anticonvulsant therapy at one of the centers. However, the
estimates of the cost of treatment from these clinics are impossibly high for
our family. We are an ordinary Russian family who lives by very simple means
and have no real savings. My husband works hard when work is available, but
does not have a current place of regular employment, and my children’s
allowance from the Russian government only pays for our most basic needs.
The first year of life is the most important and most promising in terms of
recovery when dealing with these illnesses. We hold the belief that the ability
for a child’s brain to recover and grow are as endless as the universe. If only
the right methods are employed. Kirill’s brain continues to grow and develop
even with the impairments he’s suffered. But we need to help him! We need the
help of caring individuals around the world!
We love our baby and believe that there is still hope for him! And our older
son Andrew loves him so much! He so eagerly waited for his brother! Now he will
not leave Kirill, even for a minute. He kisses him, brings him his favorite
toys, keeps holding his hand and waits for his brother to do the same in
return. We very much hope that Andrew and all of us will soon see the first
cognitive smile, hear the first word and witness the first steps of our
beautiful baby Kirill!
We sincerely believe and hope that there will be people who will understand and
help support us! Thank you very much for your help and donations, and for
taking the time to read Kirill’s story....so far!
Please help our dreams come true!
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