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Summer now.
It was at our 12 week scan on the 27th December 2007 that the doctors informed us that they could see that our baby had a large Exomphalos. We had never heard of the condition and when they explained to us that it is often an indicator of other chromosomal disorders we were devastated. We were offered a CVS test the next day which was quick and relatively painless to determine whether our baby may have Patau's or Edwards syndrome. All we could do now was wait for the results.

Due to the time of year, Bournemouth Hospital rushed the results through for us which was much appreciated and on the 31st December we were told that the results were negative for any chromosomal disorder. We celebrated with a great New Years Eve!! Obviously our baby still had the Exomphalos so we had a decision to make as to whether to continue the pregnancy or not and at times we felt the hospital were very negative about the condition and almost expected us to end the pregnancy.

 

Summer and Mum

We were referred to Southampton Hospital as they have the nearest baby neonatal unit to where we live. The consultant team we saw there were excellent and once they knew we were determined to carry on with the pregnancy they were very supportive. We had scans every two to three weeks at either Bournemouth or Southampton so they could keep a close eye on how our baby was developing. The doctors were pretty certain that the baby's other organs were all developing correctly - heart, lungs etc but they explained that the Exomphalos was huge and that they can only see so much on an ultrasound meaning they would have to wait till the baby was born to give an absolute evaluation on its overall health. We decided not to find out the sex of the baby as due to all the scans we felt we already knew so much about our baby that we wanted a surprise.

My consultant was happy for me to go into spontaneous labour and try and give birth naturally but said that if I had not gone into labour by my due date then I would be induced on the 7th July 2008 - two days after due date. My waters broke on the Sunday 6th July but I didn't have any contractions so on the Monday 7th I was induced. 12 hours of labour later and the baby was getting distressed so the doctors decided to do an emergency C-Section.
At 10.04am on the 8th July 2008 Summer Hope Rudd was born weighing 6lb 10oz. We were very surprised that she was a girl but so pleased!!!

Summer was taken directly to the Neonatal unit and was hooked up to oxygen, heart and lung monitors and had a canula put in each hand. When I was taken to see her for the first time she looked so tiny all wired up but she looked at me with her big blue eyes and I fell instantly in love with her and I didn't even notice her Exomphalos!

Pretty in Pink
The doctors decided to treat the Exomphalos conservatively as it was larger than anticipated and Summer's abdomen would not be able to accommodate it. This means allowing the skin to grow up and over the Exomphalos and then putting it back inside when she is older - probably two or three years old. The Exomphalos was originally covered with surgical clingfilm which has to be changed daily. We gradually started changing the dressing ourselves under the supervision of the nurses/doctors. We also helped with her feeding which was originally done through a nose tube , then a syringe and they always let us do the dirty nappies!. After a week and a half I was able to try breast feeding but the doctors did not feel Summer was getting enough calories to put on weight and grow the skin over her Exomphalos. Therefore she is now having half breast feeding and half SMA High Energy formula to give her the extra calories she needs.

Summer stayed in hospital for three weeks mainly due to the fact that she had an infection and lost quite a lot of weight. At three weeks old she came home but still had to be taken to the hospital weekly for a check-up on her tummy and weight gain.

Summer is now ten weeks old and since she has been home her Exomphalos has reduced in size by half - much to her doctors surprise. The skin has almost grown completely over her tummy - it really is a miracle to watch. She now weighs 8lb 9oz and every day amazes us with how well she is doing. She has had no other complications and is the most cheerful baby - with amazing smiles.

The doctors plan to operate on her tummy when she is two or three years old which will be another big hurdle to overcome but I am sure our amazing daughter will cope wonderfully as she has with everything else so far!!

Summer's Blog can be found here Blog