we don't know when Prom happened to us -
I have guessed at 17 weeks as that is
the time the doctors presumed it
happened. It could have been much
earlier however we just know it was
between 12 and 18 weeks. I hope this
story helps someone going through this
horrendous time. Please feel free to
contact me. Apologies for the length of
the story but I know from reading others
that details are important when you are
in this position ...
On December 13th 2006 I found out I was
pregnant. After several months of
trying to conceive we were absolutely
delighted. The first few months of my
pregnancy were uneventful, just the
normal morning sickness and tiredness.
When I reached 18 weeks I received a
phone call which was the start of the
most terrifying time of our lives. It
was a nurse to say our triple test
results indicated that our baby could
have spina bifida and we would need a
scan later that week to find out. That
Friday we went to Pontefract for the
scan and after about 20 minutes of
scanning the radiologist went out the
room. When she came back she said that
we needed to go and see a midwife
downstairs in the day unit. I was now
beside myself with emotion although when
we got downstairs the news was fairly
inconclusive. The midwife said that the
scan showed the baby had hardly any
amniotic fluid surrounding it and they
could not see clearly so we needed to be
referred to a specialist in Leeds. The
next appointment was the following
Tuesday. After a very sleepless weekend
spent reading up about low amniotic
fluid we went to Leeds feeling very
pessimistic. All the internet sites we
looked at gave a very poor prognosis for
a baby in low levels of amniotic fluid
so early in pregnancy. I read that a
way to help raise these levels was to
drink as much water as possible. In our
mind this was the only way I could help
this unborn baby we already loved so
much survive. So for the remainder of
the pregnancy I drank between 3 and 5
litres of water a day.
At LGI the consultant scanned me and the
news was not as bad as we were
expecting. Our baby looked perfectly
fine to her (no spina bifida) but she
could still not see very clearly as the
fluid levels were still low. She was
not worried about this, however, and
said they would keep a close eye on me
but they thought the outlook was not too
bad. We left feeling quite positive
with our appointment booked in two
weeks. In this two weeks we got back to
some normality and, as a teacher, I
returned to work. I had taken the few
days off between the last two scans as I
didn’t feel emotionally able to cope
with work.
When the day arrived for the next scan
we were quite relaxed and we decided
that my husband didn’t need to attend
this scan as he was using up his holiday
allowance extremely quickly!
Accompanied by my Mother in Law I went
to Leeds on the train and back to LGI.
As soon as the consultant began the scan
I knew something wasn’t right – the
doctors mumbled between themselves
before finally telling me there was
hardly any fluid again around the baby
and this was very bad news. We were
told that there were three possible
causes of low fluid levels and they
needed to find out which one it was. We
were told that the first thing they
needed to do was a chorionic virus
sampling (CVS) test to rule out a
genetic problem with the baby. Earlier
in the pregnancy I had been opposed to
any such testing but now it seemed like
a necessity. I rang Dean (my husband)
in tears and we decided I would have the
CVS test done there and then. I was
terrified that our baby would be harmed
and we were very lucky that the
procedure was uneventful and the
following day the results came back
showing there were no genetic problems.
Another cause of low AFI (fluid levels)
could be lack of kidney function or
bladder problems but again the scan had
shown this not to be the case.
We now had a two week wait until we saw
a consultant. In this time we were both
confused as to how I could have low
fluid levels as the only remaining
possible cause was premature rupture of
membranes (PROM). We were sure this
wasn’t the case as I would have known –
wouldn’t I? The day finally arrived for
the consultant appointment at
Pontefract. We naively presumed that
this would be a very quick appointment
as he had never scanned me and did not
really know our history. We guessed
(wrongly) that he would just say the
consultant in Leeds at the next day’s
appointment would give us details and
put a care plan in place. So
considering this we decided Dean should
go to work that day and have the next
day off for the important appointment.
This was a bad decision, which we both
regret now. The consultant that day
absolutely devastated me when he told me
the chances of us having a healthy baby
were very slim and the best option may
be a termination. At this stage I was
23 weeks pregnant and our baby was
moving around. He also said that I was
now given the diagnosis of PROM and as
such I was at a high risk of contracting
a serious virus, which could harm the
baby and make me infertile. I asked as
many questions as I could think of
through my tears and my Mum was a
fantastic support. The consultant said
I could go home to ring Dean and make my
decision but they would get me into
labour ward that day to deliver if I
decided upon a termination. I was
adamant that I would never terminate
this precious baby but the prognosis for
our baby was so bleak. We were told
that he would definitely be premature
and probably within the next week or
two, he would probably have pulmonary
hypoplasia and he would probably have
many limb abnormalities due to being so
squashed.
Devastated at the news I went home. I
rang Dean straight away. All I could
say was “they want us to terminate but
I’m not, they have said the baby will
probably die”. Dean came straight home
equally distraught. When he got home my
Mum explained everything that had been
said. At this stage our opinions began
to differ for the first time. Dean said
he had to think of me and if I was at
risk of contracting a virus, which would
not only make me infertile but could
threaten my life he had to prioritise
me. These factors never crossed my
mind. This baby was my priority and
there was no chance that I was having a
termination. Dean was very opposed to
terminating the pregnancy but felt like
he was stuck in the middle and did not
know what to do. We spent a long
afternoon and evening discussing our
options, crying and researching on the
internet. In the end we decided we
would wait to see what happened at the
scan the next day and get a second
opinion – thank goodness we did.
At LGI the following morning we both
felt sick as we waited for the
consultant to see us. Finally we were
called in to the room and I was in tears
before I’d even got onto the bed to be
scanned. We explained what we had been
told and then the scan began. Amazingly
the fluid levels had risen slightly to
just within the normal range.
Afterwards we were told that there was
now a small but significant chance that
we could have a healthy baby. Dean
mentioned 50% but the consultant
immediately said no it was much lower
than that but there was a small chance.
On hearing this our decision was made.
We would continue with the pregnancy, I
would be on bed rest for the remainder
of the time and we would return to
Pontefract the following day to put a
care plan in place.
We left Leeds feeling slightly more
positive although we knew we had a
testing time ahead of us. At Pontefract
the following day it was decided that I
would attend the day unit twice weekly
for blood tests and swabs to screen for
infection. I would also have
fortnightly scans and consultant
appointments.
The next several weeks were one huge
long scare. A week after making all
these decisions I began to bleed and was
admitted to hospital. We were shown
around SCBU, given steroids and survival
rates for a 24 week baby. After 4 days
with no contractions I returned home
only to be readmitted several times in
the following weeks. By now I was
losing fluid almost as fast as it was
being produced and it was nearly always
mixed with blood. I was on a constant
countdown to 28 weeks as this is the
stage that our SCBU accepts premmies –
before this time and I would need to be
transferred.
Once I reached 28 weeks I relaxed a
little but when I was 29+2 I woke in the
middle of the night with regular
contractions. I rang labour ward and
was told to get there immediately with
my bag as SCBU was full and I would need
to be transferred if I was in labour.
On examination they found my cervix was
long still and not dilated. The
contractions continued though for a
couple of days so I was kept in as a
precautionary measure.
On the Saturday I was allowed home. I
was very uncomfortable and finding it
difficult to walk properly. I put this
down to the fact that there was no fluid
protecting the baby and that meant it
would be bumping against me. The
contractions continued and became even
more regular the following day. We were
going to have dinner with my Mum and Dad
at their house. It was a treat to be
going to lie on a different sofa for a
change! When there the contractions
were 10 minutes apart but as the
hospital hadn’t been worried the day
before I decided not to worry either.
Whilst eating dinner they became more
regular to the stage where they were
every 3 minutes. At this stage my Mum
insisted we went straight back to
hospital.
On arriving in labour ward I was given a
speculum examination. This is the only
type of examination they will do if your
waters have gone to avoid infection.
The doctor said I was in labour and at
least 2-3 cm dilated although he
couldn’t see fully. We were both
terrified. We were sure it would be
another false alarm – it was much too
early for our baby to be born. The next
bit of bad news was that SCBU was still
full and they would need to find a cot
and transfer us ASAP. This couldn’t be
done immediately though as I was
contracting too much and had to be given
drugs to slow the labour down. I was
also given antibiotics in case an
infection had set in. Dean was rushing
around phoning people – we didn’t even
have my bag with us as we’d come
straight from my parent’s house. My Mum
and Dad arrived with my bag at roughly
the same time as the ambulance. We were
relieved to hear there was a cot at St.
James – only 20 miles away. We were
transferred with flashing lights and
sirens in an impressive 19 minutes!
I was devastated that we’d had to be
transferred. After spending several
weeks in our local hospital I felt like
I knew the midwives and was confident
that I would be well looked after.
Arriving in a strange hospital when
you’re in premature labour is an
extremely frightening experience. The
first midwife looking after us did
little to ease this. She just kept
asking why I wasn’t asleep and gave me 2
co-codamol for the pain! I explained
that I was in a lot of pain and it was
only much later that I got an injection
of morphine. Although this helped she
was still insistent that I should be
asleep. I kept saying the pains were
worse and more regular but she didn’t
examine me or do much to ease my
worries. I wasn’t even offered gas and
air!
At 7.30 am the nurses handed over and
the new midwife came in to see me. I
told her I was in a lot of pain now and
felt that I needed to be examined. She
said the doctors would do this when they
did their rounds at 9am. At 7.50 am I
said I could wait no longer and needed
to push so she gave in and finally
examined me. On doing so she said the
head was right there and the baby would
be born very quickly. However, I still
couldn’t push as she hadn’t set up and
she needed to call the paediatric crash
team. This all happened very quickly
and with 3 pushes our beautiful son was
born at 8.06am.
It was only when he was born that the
fear closed in on me. What if our baby
had no lung tissue as we had been
warned? What if he didn’t live? Then
we heard a cry. I know everyone says
that is the best sound in the world but
it really was for us. After all this
worry our baby was here and alive! The
paediatricians quickly showed us Jacob
Lewis before whisking him away to NICU.
He was in hospital for 52 days and is
now home safe and well. The only
ongoing issue with his health is a mild
heart murmur. He really is a miracle
... I hope someone gets some inspiration
from our story.
|
|