I never saw my husband crying.
Except the day when our son was born. More
than happiness the tears reflected a
sense of relief that we three had finally met.
Abir was a surprise baby and we
were so glad that it happened that way. For me and my husband could never
muster enough courage to house a tiny little soul with deliberation inside my
broken body, which had over the years witnessed
more than one medical predicament.
(Reader alert: Biology haters can
ignore the green text, though reading it
won't hurt :))
I am HLA-B27 positive1.
At 17 years of age I was diagnosed with an autoimmune disease: Rheumatoid arthritis
(RA) which has over the years distorted
my joints and backbone and restricted my mobility. When
I was carrying Abir, I suffered from several episodes of Anterior Uveitis, an
HLAB27 associated ocular inflammation which is extremely painful and debilitating and if untreated can lead to
glaucoma and permanent vision loss . Sometimes I wonder why my husband even
married me? What was he thinking? (Just joking, please don't leave me). So we needed
to put a leash on my immune system. But systemic immunosuppression is complicated, more so during pregnancy. I could not be treated by any pharmacological
inhibitors2 due to potential
risk of running a severely compromised immune system in the foetus. So, I was put through a high dose
systemic corticosteroid therapy, which was also far from ideal for a developing
baby3 but the most tangible solution at that moment and till today
while I am breast feeding him.
At 11 weeks of pregnancy, my gynaecologist called me at work with certain urgency that terrified me. My first trimester screening indicated a high risk for Down syndrome and other chromosomal abnormalities in our baby and a prospective placental dysfunction. We had one week to undergo an ultra sensitive ultrasound (US) to look for developmental defects followed by amniocentesis to decide if we wanted our child or not. But as Murphy would have it with us, the earliest sonography appointment we could get in entire Hannover was in next 2 months! But when doors close, tiny windows open up. We had found ourselves with a gynaecologist who was full of empathy, a rare human virtue these days and she helped us in getting an appointment in a week. The wait was excruciating and so stressful that my immune system acted up once again to give a full blown relapse of Uveitis in my eyes and I was back on strong and unwanted medications.
The joy of motherhood seems like a joke, that too a
cruel one when you need to decide if you wish to give upon the baby growing
inside you. But we decided, that we never would. We wouldn't play God. If our
baby had even the slightest chance to live, we would welcome him in this world
and would promise him the best quality of life possible in our capacity. The
scan suggested that Abir was developing
fine but there was still a 5% chance that he may still be born with the chromosomal
defects. Amniocentesis would have been reassuring, but we opted out of it since
it carried a risk for premature abortion and infections . That's
the day we also got to know that he was a he :)
Due to chronic illness and a fragile pregnancy, I was transferred to the department dealing with high risk pregnancy (HR) in MHH (hospital where I work). And since then every day in our lives revolved around only appointments. And after every appointment we would go home defeated and broken. There was always something. Be it waking up bleeding and seeing a large hematoma (blood clot) sitting right next to my baby on a scan. Or millions of floating debris (from blood clots) clouding the otherwise pristine amniotic fluid nestling my baby. I had such severe nausea and acidity that sometimes I felt even the water that I drank became sulphuric acid inside my stomach! Once the nausea had settled, thanks to my high metabolic rate, all efforts to stick any fat to my petite frame were futile (so much so I didn't discriminate even junk! I was eating trash like an entire pizza every other day, just in case it helped).
Due to chronic illness and a fragile pregnancy, I was transferred to the department dealing with high risk pregnancy (HR) in MHH (hospital where I work). And since then every day in our lives revolved around only appointments. And after every appointment we would go home defeated and broken. There was always something. Be it waking up bleeding and seeing a large hematoma (blood clot) sitting right next to my baby on a scan. Or millions of floating debris (from blood clots) clouding the otherwise pristine amniotic fluid nestling my baby. I had such severe nausea and acidity that sometimes I felt even the water that I drank became sulphuric acid inside my stomach! Once the nausea had settled, thanks to my high metabolic rate, all efforts to stick any fat to my petite frame were futile (so much so I didn't discriminate even junk! I was eating trash like an entire pizza every other day, just in case it helped).
Sometimes, I would count
down the many ways in which instead of being nurtured my baby was actually
trapped inside my body. But then my husband would nudge me to focus on
how it would be when he would arrive. How would he look , smell and feel. And
for this and thousand other things that could go wrong but didn't, I am always
thankful.
1HLA is a gene complex which encodes the major histocompatibility complex (MHC) proteins. These cell-surface proteins regulate immune response in humans. HLA-B27 is a subtype which is strongly associated with developing certain autoimmune diseases (diseases where our immune system attacks the healthy cells of one's own body).
1HLA is a gene complex which encodes the major histocompatibility complex (MHC) proteins. These cell-surface proteins regulate immune response in humans. HLA-B27 is a subtype which is strongly associated with developing certain autoimmune diseases (diseases where our immune system attacks the healthy cells of one's own body).
2Such as anti-TNF alpha blockers which suppress TNF alpha, a major biological mediator of inflammation during RA.
3Clinical trials conducted in first trimester have shown corticosteroid therapy to be teratogenic and associated with appearance of oral clefts, premature rupture of amniotic membrane, preterm delivery , low birth weight babies, gestational diabetes and preeclampsia. And a lot of it turned out to be true in my case.
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