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Patients and Families
| - Kishore and Anik
- Tale of a Mother of two
sons who suffered from WAS
- Introductory note:
- My
name is Lila Rashid, I am from Bangladesh. I am a mother of two unlucky sons
who was suffering from WAS. I didn’t know though whether following story of my
life would help anybody, but I could not stop writing after starting. It helped
me to recall my memories of those days of 1990-2002 in detail after many years
and I found that the wound had started healing by natural process. During
writing I also wondered by noticing that I have gained so much rare experiences
through these which were helpful for me to understand many dimensions of life
and to come close to many people.
- Part-1:
- My
first son was born on 3rd January 1990, it was a normal delivery. I got
pregnant normally and there was absolutely no problem during pregnancy, I did
my regular duties before going to the hospital for delivery. It was a perfect happy moment for my
family members as it happened to all. I came back home from hospital after two
days as usual. One day suddenly I noticed a red strip, like a thin thread, in
the stool of my son when he was just ten-day old baby. First I did not consider it
seriously, but my mind was alert. Then I started noticing it more frequently
and found that the thin thread begun to move into heavy thing. My father-in-law
was a doctor, so we informed him the matter immediately. Our first impression
was that it would be a kind of dysentery, so the baby was treated medically
along that line. But no
improvement was shown after medication, and then we thought that possibly there
might have any polyp on the way of anus. But nothing was found during
investigation. Till that time we had not thought about any disease related to
the problem of blood. Initially, other conditions of the baby were fine and he
was growing just like any normal child. But, investigation and consultations
with other doctors were going on. Gradually, mild fever had grown another
concern, and the baby needed series of blood transfusions because of the
symptom of low hemoglobin. Finally, he admitted to a local hospital for serious
investigation under a child hematologist when he was seven months old, the
hospital did diagnosis the problem as ITP (another kind of blood disease that
causes internal hemorrhage mostly under the skin) and assured that it might not
be a very serious issue for the life of the baby and would be curable over
time. In the meantime, we started communicating doctors residing abroad which
was not at all as easy as it is now. The child’s health condition started
declining seriously though his overall mental development was perfectly
alright, he was a very lively and sharp baby. Every day we had started experiencing
new and new problems such as bleeding under the skin, bleeding from nose, blood
spots in the eyes, eczema here and there (it took time to consider it as
eczema), high fever, diarrhea , etc. etc. and became unmanageable. Since no
doctor was found locally to cure the disease and no clear contact could be
established with any other foreign doctor, my father-in-law started collecting
reading materials related to this with the help of local British Council
office. One day he found some clue in a medical journal which mentioned that it
could be an X-linked genetic disease and very rare. At the beginning of 1992, child’s
overall health condition seemed life threatening, so on 1st March 1992 we took him to a hospital
in Bangkok with the help of a British doctor who was known to my father-in-law.
A medical team was formed there under that hospital to investigate the problem,
they did many tests including bone marrow. Before getting the final
result, in the middle of the investigation one day the baby suddenly felt down
from the bed in front of us while we were talking to the doctor. No serious
injury was found immediately, but after twenty four hours he had started
complaining about headache. Intensity of that pain gradually increased with
time and within a day the baby went into comma. He did not come back again from
that stage and finally passed away on 11th March 1992. We came back home with his
body. Later we were
informed from that hospital that the medical team suspected the diseases as
WAS, but they needed more information to confirm which was not possible to
provide during that time.
- Part-2:
- So,
we acquired partial/ incomplete information in return of the life of our first
son. Then my father-in-law started reading materials related to WAS and informed
us that this disease was X-lined which meant that the mother was the carrier.
He also requested us to stop thinking about taking another risk of that type.
Actually he was very much emotionally (both as a doctor and as a grandfather)
attached with his only grandchild. He could not accept this shock all through
his life. But as young parents we thought that the same accident might not
happen again, we were also not medically well informed as internet and other
facilities of communication were not available during that time. In the
meantime, my husband went to Philippines for a PhD program in 1994. I joined
him after a couple of months, I thought that Philippines might be in a better
shape to provide us more information and to provide us better medical facilities.
Accordingly we communicated some specialists/ hospitals in Manila, but failed
to get more information or hope. I desperately wanted another baby just like
many probable mothers of this world. So, I got pregnant again in the hope that
it would be a girl this time and it might not repeat. As a Catholic Christian
society, doctors in Philippines discouraged me not to go through any screening
process to know about the sex of the fetus. After a while I knew that it was a
baby boy again during ultrasound when it was five-months pregnancy which news
was enough to make me panic again. I had no other way except to accept the
reality what might be, so I had been preparing myself rest of my pregnancy
period for anything what could be. Finally on 12th December 1995 my second son was born
in a hospital in Philippines. This time we had nobody (new friends were not
aware of this disease) to share our tension in a foreign country, and had
little money to cope with any serious problem as we were dependent on poor scholarship
for fund/income. I spent most of my nights without sleep after thinking of the
possibility of the same accident but it happened again. By demolishing all hope
I had noticed a strip of blood with the stool when the baby was ten days old,
just like before. It shattered my soul tremendously, I spent first two months
without any conscious feeling/move (most of the time my husband took care of
the baby). I just cried and cried without thinking anything, I cried before
going to sleep, in the middle of my sleep, after waking up from sleep. I cried
day and night, while eating food, while feeding the baby, when not?. Sometime
after two months gradually I realized that I should have to think about my plan
about this baby. In the meantime, in absence of good sleep and proper food I
started losing capacity of breast-feeding the baby and finally had to stop it
(psychologically I wanted to reduce emotional bondage with this baby). In my subconscious mind I knew that he
would not survive more than two years whatever I did, so we needed to decide
our courses of action. From the experience of my first son I realized that
period of lifetime could not ensure the quality of life, any life could be
meaningful for any period of time (short or long was immaterial). First we had
decided to provide the baby a good quality of life within our capacity and to
make involve as less people as possible with this pain. During that time we
were the most knowledgeable and experienced people in front of us, so we had
not visited doctors as it was not very urgent like blood transfusion or
something like that. We wanted to ensure the highest comfort for the baby, and
to give him our best with love and care; that was all. However, in request of
one of my cousins, who was studying in a cancer institute of Japan during that
time, we sent a sample of blood of the boy from Philippines to Japan with the
help of a doctor in Philippines (Dr. Padua). This sample was sent to Dr. Ariga of
Hokkaido University School of Medicine in Japan. At the same time, we also
received a request from another hospital in Japan to join with them as
experimental patient (at no cost) which we refused. After completing my
husband’s course we came back home sometime in August 1996 when the baby was
eight months old. He was very sick, suffering from fever, bloody stool, nausea,
vomiting etc. He did not have any eczema problem though. But I had much
stronger bondage with this baby as I knew his time to go away was very
close. In case of my first
baby I never thought about his death, I dreamt about his full cure one
day. This time it was a bit different situation, more tough battle, more
knowledge, less family support but much strong moral. After coming home back we
were under the supervision of a local child specialist for day to day support.
By November 1996 the boy became very sick and we found that he was suffering
from pneumonia, so he got admitted to a local hospital. But condition did not
improve at all, more complexities raised due to the new problems of diarrhea
and less hemoglobin. Finally
it became unmanageable and he passed away on 3rd December 1996 in a local clinic. After
his death, we received a sympathetic letter from Dr. Ariga and Dr. Padua along
with a copy of their publication in an international journal (BBA 1317 issue)
which finally confirmed us that it was actually WAS. Then I stopped thinking
about this issue for the time being.
- Part-3:
- I
went to USA in 1998 for two years to complete a course with the financial help
from my office. This sudden scope for me to stay in a develop country for two
years with good scholarship again triggered my thought to search the
opportunity of having a healthy baby! The quest was not only of getting a
healthy baby but also to know more about this unknown enemy. I started looking for information
again and communicating doctors. This time I had better technology in hand, I
had access to information via internet which I used as much as possible.
Meanwhile, I received a request from a hospital in Pennsylvania, USA to be an
experimental patient without any cost (which meant, be pregnant under their
supervision and continue it for their experiment with the baby), which I
refused again. Finally I met a doctor in New Orleans who knew well about this
disease and suggested me the way of getting a healthy baby. His suggestion was
as simple as getting pregnant first, having screening test during early stage
of pregnancy and continuing it if it indicated female child. He introduced me with a good
gynecologist who dealt with complicated pregnancies. Under his guidance I got pregnant
twice, but first time I had miscarriage for unknown reason and second time
because of the screening test. After
went through two mishaps and after considering my age (I was about 38 during
that time) I finally stopped this project. But I was a bit comfortable after
knowing who my enemy was and after getting all available information till to
that time. I came back home in August 2000 and prepared myself for new
childless life.
- Part-4:
- But
the dream of feeling the presence of a little girl in our family did continue
deep in my heart. Sometime in November 2001 I noticed that I got pregnant again
when I would be 40 soon. I disclosed the information only to my husband and
visited a regular gynecologist nearby to discuss the matter. After doing
preliminary tests she confirmed us that I had twine baby inside me, which
started creating another tension for us. Since we knew that any girl child would
not be affected by this disease though she might be a carrier like me, we
thought that if it was two girls or two boys taking decision would be easier
for us; either continue or terminate. But if one of them was boy and the other
one was girl then we would be in a position of difficult choice again. During
that time no early screening test was available in Bangladesh, so my doctor
requested me to visit a doctor in Singapore whom she met a few days ago. We
communicated that doctor in Singapore via email, and made appointment with him.
In the middle of February 2002 I had gone through the test in a hospital in
Singapore, and again had to face our bad luck with little good news. One of the
babies was boy and the other one was found girl but they were in two different
ovaries. That doctor in Singapore was very confident; he assured us that he
would help us to terminate the boy without disturbing the girl though there
involved some risks factors related to it. We had no other options available
except that, so we took that risk. The doctor stopped the growth of the boy
inside the ovary and let the girl grew normally. I continued that pregnancy
without any problem, but I was under close monitoring. I came back home and
waited till 32 weeks of pregnancy. According to the doctor’s suggestion I went
to Singapore again for delivery and finally our precious miracle baby was born
on 26th July 2002 by a
normal delivery. Our dream came into true after twelve years of waiting and
hard battle.
- However,
we did not investigate yet whether our daughter is a carrier or not. We thought
that she would do it by herself if she felt so. We did not want to take that
worry in our life at this stage because it would not help us anyway. We also
thought that when medical help would be needed in her life, medical science
related to this disease would be in a better shape than now by that time. So,
we took the decision to wait and to enjoy our life meanwhile as well. We have
prepared a medical file for her which we will hand over when she gets ready.
- N.B:
Attached below is the Scientific paper written in 1996 about my younger son
Anik. My older son was Kishore.
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