This is my daughters Ebsteins Story:
my blog is
http://coledavidreid.blogspot.com
I had a difficult pregnancy, summer is definitely
very different carrying than in winter, I put on 20kg
could hardly walk and the Gauteng heat was unbearable
over December, not to mention the water retention I
could not wait to give birth. Eden Kate Reid arrived on
the 13th of February at 18:33 via caesarian
section looking the splitting image of her 2 year old
brother. Those were the only thoughts I had as a few
seconds later the paediatrician was doing her apgar test
I noticed that the paediatrician had a very worried look
on her face, I kept asking from the table what was wrong
but no answer, eventually the paed came over and
informed me that something was wrong with my baby’s
heart they were hearing a heart murmur and they were
going to take her for a sonar for further observation,
my husband went with the doctors and baby for the sonar
they were gone for about 30 minutes which felt like a
lifetime before they came back to inform me that Eden
was in neonatal ICU and that they had discovered that
she had a heart condition known as Ebsteins anomaly a
rare heart defect that’s present at birth, the tricuspid
valve, the valve between the chambers on the right side
of your heart doesn’t work properly. Blood leaks back
through the valve making your heart work less
efficiently and may lead to enlargement of the heart or
heart failure, news that doesn’t instantly sink in once
you hear them, all you can make out is “heart failure”
those are the only words that stick.
Immediately asking paediatrician and the
paediatric cardiologists “Is my baby going to be okay”
and their answers “we don’t know” you can imagine the
panic I went through immediately going into
uncontrollable shaking from shock and the after effects
of the spinal block.. I then asked “Is she going to
die?” with which they responded “we don’t know” I
immediately chose to ignore what they were saying as
they clearly weren’t going to give me the answers I
wanted. I asked to be wheeled through to my baby who
was picture perfect, feeding and oxygen tubes in her
nose but she was gorgeous, perfect colour skin and
looking up at me with her pretty little eyes. I’m not
sure how I got through the first night without worrying
to death but we did. In the morning it seemed things
had changed drastically the doctors informed me that the
leaking valve was not leaking as much anymore and the
heart murmur sounded dramatically better than it had the
night before I could now listen to what the doctors had
to say. They were going to leave her in neonatal for
approximately 10 days to monitor her and see how she was
going to cope with feeding and then slowly let her off
the oxygen and see if she could cope on her own.
Sitting in the birthing ward surrounded with moms and
their babies and you are in your bed recovering alone is
very depressing but the continuos flow of good news kept
me going.
The next few days were more and more promising
she took to breastfeeding well and by day 5 they removed
the oxygen she also coped extremely well and we were
released from neonatal 7 days later.
Eden’s heart will be monitored for the rest of
her life and only time will tell how she copes with her
condition and the steps we will need to take in the
future, heart surgery might be on the cards for the
future to help repair the valves but until then she will
be visiting the cardiologist on a regular basis. The
main precautions for now is to ensure that she does not
get any chest infections which might put unnecessary
workload on her heart which can be prevented by a
special vaccine Synagis which helps boost her immune
system to fight such infections should she pick anything
up especially during winter. Other restrictions include
no competitive sports and pregnancy in the future can
also put strain on her heart. I am hopeful that by then
medicine will have evolved so that they will have a
complete fix for my little girl and that she will grow
up happy and healthy.
We are happy to have her home and healthy.