GEEPS logo

Callum & friend
Callum & Friend

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 for delivery.

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 the pregnancy!