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Joshua with Exomphalos wrapped in surgical film

My wife Mandy and I were informed that our baby had an Exomphalos at 13 weeks, We were unprepared for this news as we had no prior knowledge of this condition. We were devastated. we had been trying to fall pregnant for 5 years and had undertaken the initial steps of the IVF program but fell pregnant naturally. Once we were diagnosed with the condition our first question was "who can we talk to who has been here". Doctors gave us medical information and we began a series of scans and tests. Mandy discovered this site and it has been a Godsend. we would not have coped as well without it.

Mandy travelled well throughout her pregnancy, and each scan or test only made us feel more positive. Our baby had an Exomphalos that contained only liver, it continued to grow as did our baby. At 21 weeks we had a heart scan and everything seemed to be fine. Another heart scan at 31 weeks had a good result. Everything seemed to be in order and we were only dealing with the Exomphalos.

At 41 weeks Mandy was induced to give birth naturally, but 5 hours into the inducement our baby's heart rate dropped 3 times in 5 minutes, the professor decided to do an emergency c-section. We were both crying as she underwent the procedure and the sweetest sound we both have ever heard was when our baby gave a cry upon delivery.

Our baby was taken to a support station and given a quick clean and the Exomphalos was wrapped in surgical film. Our son Joshua had arrived.


Joshua after his closure

Whilst Mandy was being sown up I went with Joshua to the NIC unit where he was weighed ( 3.3 kgs or 7lbs 3 ) and prepared to be transported to the Sydney Children's Hospital at Westmead, a 10 minute journey.

Joshua was received at the Grace Neonatal Intensive care unit and both he and I were looked after. The NIC unit was a bit overwhelming even though we had a tour and met some staff before hand, it was a bit unnerving listening to the beeps and alarms of the monitors. I must have stayed there for hours just watching the monitor. By this time Mandy was recovering in hospital, and had not yet seen our son. The staff took a great picture of him and I took it to Mandy. We both stared at the picture for a long time, tears flowing. We couldn't believe that our son was here.

Joshua was scheduled to have his operation the next day, he would be 22 hours old. Mandy was feeling well enough to travel to the kids hospital by wheelchair the next day, she had her first sight and cuddle of our son. We stayed with him until he was transferred to a humidicrib and taken to surgery. The next 2 hours were the longest of our lives. When the pager I was given went off I raced back to the children's hospital to be given the news by Dr Harvey that the surgery went well and Joshua's Exomphalos contained only the liver and they had been able to complete a full closure.

A happy and smiling Joshua!

Over the next couple of days Joshua continued to get stronger, and one by one his monitors began to be removed. Mandy and I both felt somewhat uneasy when we were receiving good news, whilst around us there were families dealing with traumatic situations. We both feel blessed. Joshua had an ultrasound and X-ray on day 4, the X-ray was to check that his organs were in the right spot, this came back as good. The ultrasound indicated he had a small hole in his heart approx 3 mm but the doctor was not overly concerned at this stage, he will investigate it further at 1 month.

We received word that Josh was being moved to the extended care section. When we arrived we found that all but 1 monitor wire was attached. He had his first bath on the day, both Mandy and I had our first lesson in bathing. The next day we were asked to come in early as Josh was going to have his first feed. Untill now he was being fed through the nose. Mandy had expressed breast milk and we were keen to see how he handled it. The teet off a bottle was placed in his mouth and 4 mls was squirted into it.

Once he got the taste he nearly swallowed the teet. He handled the milk well and at each feed the level was increased. He was the star attraction on the ward, the staff couldn't believe how fair his hair was. By day 8 he was completely free of wires and tubes. He just laid there and took it all in. It was on this day that we were asked to room in. That's when Mandy and I stayed overnight in a parents room in the NIC unit.

We had Josh to ourselves. Things went well although we didn't sleep much. We were to busy looking at him all-night. The next day we were asked if we wanted to stay overnight again or we could go home.......with Joshua. There's no place like home.

Joshua has been home 2 weeks now and things are going well. He is putting on weight, eating 110 mls of breastmilk every 3-4 hours as well as weeing and poohing on his Mum and Dad.

Joshua is now 8 weeks old and thriving, he continues to grow and is a very content baby. His scar is almost unnoticable. We can't say thanks enough to the parents who have supported us over this journey. This site has been a Godsend.