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My name is Riekie Cloete.
This is my sister´s tragic story.
2 years ago my sister,
Debbie, was delighted to find out she was pregnant. Unfortunately, she had high
blood pressure and as a result she was very concerned for the unborn within her.
At that stage she had no idea that APS existed, never mind that it would cause us
all so much unhappiness.
Six months into her pregnancy
she began to feel severe upper abdominal pain - her GP suggested this was heart
burn - and on her next scan it showed that there was no more amniotic fluid and
that the baby had suffered from severe growth retardation. At this stage Debbie
had already suffered severe liver damage and her blood pressure was sky high.
The doctors then
tried to give her some steroids for the baby´s lungs to mature. A week later and
my sister was near death, so an emergency Cesarian section was carried out. Unfortunately
the baby weighed only 400g and there was no hope from the staff that he would survive.
He lived for a whole day trying to fight, but gave up in the end.
Only then did a specialist test her and
she was positive for APS.
Now, 2 years later she is 35
and nobody can help her to get pregnant again, no support, nothing! All they are
prepared to say is that the medications she has to take for her BP cannot be taken
while she is pregnant!
I hope there is
someone out there who can help my sister as she feels she will never experience
the joy of motherhood.
And that´s so sad!
This is my story.
We live in London. I fell pregnant
last year and had a miscarriage at 6 weeks. I informed the doctor that my sister
is an APS sufferer. The doctors response? You have to have at least 3 miscarriages
for you to be tested!
At age 30 I fell
pregnant again. This time we were quite a bit stressed due to our history with pregnancies.
I got tested for APS, but my test was negative. I was so relieved to hear this!
We then returned to SA for the birth of our son.
At 34 weeks pregnant I suddenly felt something is wrong:
my baby is not moving!
Went to my doctor for a scan.
"Sorry, no fetal heart beat!!!"
What had just happened felt
like my whole body went into shock, as if someone had taken away my ability to live!
After a traumatic Caesarian
section, I still tested negative for APS.
My placenta was white as snow, which meant
that no blood had been able to get to my baby due to the clots in the umbilical
cord!!
We returned to
the UK, as we had only gone home to SA to raise a child.
I was referred to a specialist in maternal medicine
who informed me that APS can test negative
in some patients.
As it is an auto-immune disease, it can flair up at any stage. They have, at last,
agreed to treat me as if I was a sufferer of APS.
I have now been referred to the Lupus Foundation
in London. APS is called theHughes
Syndrome
in the UK. See the link to their website on the Links page as it might be able to
provide answers to your questions which the SA site does not yet have.
For now, I am awaiting my appointments to determine
my risk to any future pregnancy. This was and still is very traumatic for my family,
but, as I am a positive person, I do believe there is hope.
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