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Experiences

Zoë just after she was born

Our daughter Zoë had been diagnosed with a large exomphalos at my routine thirteen week scan. We were referred to Mr Jauniaux at the University College Hospital Fetal Medicine Unit for a CVS. Two weeks later the results showed no chromosome abnormality. It also told us that we were expecting a little girl, which really helped us create an identity for this tiny person who was to face many hurdles before she was better. We named her Zoë, which is Greek for 'life'.

We continued to have regular ultrasound scans at the Fetal Medicine Unit right up until her birth, including a very thorough heart scan with Mr Yates, a Cardio-thoracic surgeon from Great Ormond Street Hospital. Our consultant from GOSH, Professor Pierro even found the time in his busy schedule to visit us a couple of times at UCH to answer any questions that we had. He even arranged for us to visit the Intensive Care Unit and the ward and meet the staff so that we could picture where Zoë would be going. It all helped to prepare us for what lay ahead.

So, in July 2000 Zoë was born three weeks early by emergency caesarean at our local hospital, three days before my planned and booked caesarean at UCH, London! She was taken to SCBU where they wrapped cling film around her exomphalos to protect it and then transferred her to Professor Pierro's team at the Neo-natal Intensive Care Unit at GOSH.

Zoë after her first operation

When Zoë was one day old she had her first operation to enclose her exomphalos in a pouch, which was suspended from the top of her NICU bed. The
surgeons then left this for about four days to allow some of the liver to drop back into the abdomen with the aid of gravity. By using this method the exomphalos was reduced in size by half. All this time Zoë was on a ventilator to help with her breathing because of the pressure on her lungs.

Then came the first of four "tucks" in theatre and two on the ward. A "tuck" meant a surgeon physically squeezed the liver into Zoë's abdomen and stitched along the top of the pouch so that it couldn't come back out. Over the next four weeks the exomphalos gradually reduced in size until the final operation when they successfully closed Zoë's abdomen. She is left with a large scar and no belly button, but every day the scar improves and you really don't even notice it half the time.

Zoë is a real fighter and managed the come off the ventilator very quickly after her operations. She was only fed TPN for the couple of days that I was unable to get to GOSH because of my caesarean and after that she tolerated breast milk. I continued to express milk even when Zoë was back in NICU and recovering, so all my excess milk was frozen. By the time we came home our freezer was full with an extra supply! I was very lucky at GOSH because they had a lovely lady called Mary who was specifically there to help new mums with their breast-feeding. She was always there to ask for advice, as it isn't always easy to know what to do especially when your baby has special needs. But it is worth persevering as it really helped me to know that I was actually doing something very useful to help my baby get better.

One thing that we were not expecting when we finally got home was for Zoë to get a series of infections in her scar. They were caused by an infection that Zoë had started to develop on the pouch just before they closed her. The pouch was stitched to her skin for four weeks and the skin had started to grow onto the pouch.

This made it very difficult to cut the pouch completely away. So some very tiny pieces remained just under Zoë's scar. The infections were cleared up easily enough each time with a course of antibiotics but it was decided that we couldn't continue like that so a date was set for April 2002 to have a minor operation to remove the remaining infected pouch material.

However in the meantime Zoë developed a rather more serious complication when she became severely jaundiced.

 
Zoë after her final closure

Professor Pierro came to our rescue once again when he discovered that Zoë's bowel had twisted around her bile duct so causing the jaundice. So, in yet another operation Zoë was fixed and we haven't looked back since. That was the first time that Professor Pierro had seen this complication in an exomphalos baby.

The only other minor complication that we had is that when Zoë was eighteen months old Mr Yates diagnosed a small hole in the heart (an ASD), but GOSH were very reassuring and at our last check up were told that this had significantly reduced. So our fingers are crossed that it will close up entirely by itself.

We really cannot thank Mr Jauniaux and his team at the University College Hospital Fetal Medicine Unit, Mr Yates and Professor Pierro and his team at Great Ormond Street Hospital enough. They helped us through a very difficult and bewildering time and left us with the feeling that nothing was too much trouble.

Zoë as she is today