Callum was diagnosed
with exomphalos during a scan following some early bleeding
when I was 11 weeks pregnant. I was referred to a consultant
at my local hospital and also to professor Rodeck at UCH in
London. My local consultant carried out an amniocentesis,
as he said the risk of a chromosome disorder was as high as
one in two. Thankfully, this proved to be alright. I had further
complications arise when my waters broke at 22 weeks. I still
do not know if this is connected in any way to the exomphalos
or to the amnio, which I had had at 14 weeks.
I did not go into labour after the waters
broke, and so was able to remain at home with a lot of support
from my family as my local consultant said I had to more or
less have bedrest. Difficult with a three year old running
around, but then the three year old was the main reason I
did not want to spend the rest of the pregnancy in hospital,
as I felt this would be incredibly stressful for all of us.
when I was 24 weeks pregnant, I was told that if I carried
the baby another 4 weeks it would be a miracle, so, we moved
in with my parents, got a bleeper for my husband and waited...
and waited! during this time, I was having monthly scans at
UCH, who were absolutely wonderful, very calm and reassuring.
The exomphalos did not get too big and contained
only liver. My waters continued to leak out all the time,
I also started to have bleeding every so often, which meant
I had to be admitted to my local hospital until it stopped.
I soon became a familiar face, what with my weekly clinic
visits to the consultant there! The greatest concern seemed
to be for callums lungs due to the lack of fluid around him
and I had to have weekly injections of dexamethasone to help
his lungs in case I went into early labour. I finally went
into labour at 36 weeks and was taken to London by ambulance
I was delivered at the Royal London as UCH
had no neonatal beds. Callum was transferred to Queen Elizabeth's
Children's Hospital (QEH) the next day, and operated on the
following day by Miss V Wright, a wonderful lady. The exomphalos
was repaired in one go successfully, and there were no problems
with the lungs. Callum was on headbox oxygen after the birth
then on a ventilator after the operation, which he pulled
out himself 20 minutes after recovery and never needed again.
He was kept at QEH for 10 days, during which
time I stayed in an adjoining room to the ward and was encouraged
to carry out as much of Callums care as I could. He was given
TPN for four days after the operation, during which time I
was helped to express my milk for him. After this, Miss Wright
started him on 3 hourly tube feeds of my expressed milk and
encouraged me to offer him the breast 4 hourly.
He soon began to gain some weight and gradually
learned to take the breast well. After 10 days in all, we
were transferred back to my local hospital (Colchester) where
we stayed for a further 4 days. We were then discharged. Callum
has gone from strength to strength since then. He had and
still has regular check ups with Miss Wright, but has not
developed any problems. He is now a happy, normal five year
old boy. he still has an umbilical hernia where the stomach
muscles are parted, but I am told this will strengthen in
time and it does not affect him in any way. His belly button
is a bit big and 'untidy' looking, but nothing you would really
notice, so I don't think he will need any more operations.
He has hypermobile joints, but again
I do not know if this is related to the exomphalos, or perhaps
being very squashed in the womb after my waters broke, or
is something he would have had anyway. he is a great kid,
a typical boy, full of noise, energy and adventure and quite
a handful, but definitely worth all the worry and angst of