It had taken us nearly 2 years to get pregnant with Ben following
a diagnosis of polycystic ovarian syndrome and 2 early miscarriages.
Following some bleeding very early on we were told at a dating
scan at 10 weeks that it looked like the baby’s intestines
were outside the body, but that there was still time for it
to descend into the abdominal cavity. Since we had a nuchal
scan booked for 3 weeks time we were told it would be reviewed
then. We were so pleased that the baby was alive that we put
it to the back of our minds.
At the 13 week nuchal scan at the Rosie Maternity Hospital,
Addenbrookes all went well, the nuchal measurement was low
and nasal bone seen, then our consultant Mr Lees confirmed
that the in fact the liver was outside the body and the condition
was called Exomphalos. We were told about the link with chromosomal
defects and advised to think about having a CVS.
We drove home in a daze and spent most of that weekend in
tears. We were booked in for another scan the following week
and decided to have the CVS test. At the scan we met Mr Samuel
who was a paediatric surgeon. Also at the scan was a doctor
from the NICU and an expert in nuchal scans. Mr Lees repeated
the nuchal scan which again was a good result, and all other
organs were checked and were all functioning and in the right
place. The baby was lying too close to the placenta so the
CVS couldn’t be done but given the good nuchal result
Mr Lees told us to consider an amniocentesis at 16 weeks subject
to another anomaly scan and a foetal heart scan with Mr Yates,
a heart specialist from Gt. Ormond Street Hospital.
The scan at 16 weeks went well and we found out we were expecting
a boy – we decided to call him Benjamin. We were told
that from the scan the chances were that the Exomphalos was
an isolated problem and that the baby was normal, but they
could only be 95% sure. The heart scan was tense but was also
fine, no defects found so we decided not to have any invasive
testing unless anything abnormal was found in future scans.
We had the regular 20 week anomaly scan and another scan with
Mr Lees and Mr Samuel at 23 weeks where we discussed the birth
and plan for surgery. We then had growth scans every 2 weeks
and each scan showed Ben was a little small but doing fine
and no other problems were detected. We then had scans every
2 weeks for the rest of the pregnancy including another successful
foetal heart scan at 28 weeks.
It was always the plan for a natural delivery with Ben unless
there was an obstetric reason not to, and surgery was planned
for within 2 days of birth. Towards the end of the pregnancy
it was found that a loop of bowel had found its way into the
Exomphalos but that it wasn’t a problem. The induction
was booked for 6th August 2006 and as the big day approached
we began to worry about not having had any invasive testing
and the links with chromosomal abnormalities, but we were also
eager to meet our son.
Mmmm.... I like this sleeping business!
We went in for the induction on
the 6th as planned but as I was too favourable they were worried
I’d deliver in the night when the paediatric team wasn’t
there so in the end they broke my waters the following morning.
After a 9 and a half hour labour Benjamin David Wakefield
was born at 6pm on the 7th August 2006 weighing 6lb 1oz. I
had a quick cuddle and then he was whisked off to the NICU
with my husband in tow. After I recovered from the delivery
I went up to the NICU to see Ben, he was just perfect, he
was breathing on his own and I didn’t even notice the
Exomphalos - all I could see was how beautiful he was.
The following day Ben had his operation at just 18 hours
old, the operation was successful although it took longer
than expected because the membrane was stuck to his liver.
But he was left with an inch long scar and a neat little belly
button. Eight hours after the operation Ben started trying
to breathe for himself so he was taken off the ventilator.
Then the following day we both had our first cuddle with him,
it was a wonderful moment for both of us, to finally have
our precious son in our arms and looking up at us. When we
went back to see Ben that evening to our delight he had been
moved to a lower dependency room in the NICU and had had his
first bowel movement!
Then the following day which was day 4 Ben was moved to SCBU
which was great, this was when we got to start caring for him.
By that evening he had his first taste of expressed breast milk
– it went down well! Then the following day he came off
all his monitors and I had my first go at breastfeeding, he
took to it straight away we were so thrilled. Over the next
few days we spent the whole day with Ben taking care of him
and he was breastfeeding during the day and having expressed
milk at night. A few days later (which was a week after his
birth) we moved to a transitional ward with him next to my bed
in a cot and then after 3 days we came home which was on day
Ben is now 17 weeks old and thriving. He’s
full of smiles and has discovered his voice, he likes nothing
better than to coo at his toys! He has just started weaing
on to solids and is over double his birth weight. Ben had
a blood test at birth and we were thrilled to find that his
chromosomes are perfectly normal – well he was always
perfect in our eyes.
The staff at the Rosie Maternity Hospital, Addenbrookes were
brilliant. They took fantastic care of us throughout the pregnancy,
delivery and Ben’s recovery and we can’t thank
them enough. He has had a follow up appointment with the neonatal
team and has been dischargedand has also had a follow up appointment
with his surgeon Mr Samuel who is happy with Ben's progress
and will see him again when he's a year old.
The GEEPS website was a godsend while I was pregnant and
I took comfort in reading all the success stories, which is
why I wanted to share Ben’s story. Good luck to everyone
going through this journey, I hope you can take inspiration