On the last Thursday of October, 2004 my husband and I went for the routine 12 week scan. At the end of scan the lady told me to take a seat as she wanted to talk to us about our baby. Instantly we knew there was a problem. She told us that our baby was ‘leaking organs’. What did that mean? We were both in complete shock. We were told that we would need to be referred to the Edinburgh Royal Infirmary for further tests.

That afternoon we had a second scan and the obstetrician scanning us started to explain what all of this meant. She told me that our baby had some organs developing outside of her abdomen and that the condition was called Exomphalos. We were told the organs included the liver, bowel and some stomach. She suggested that I have a CVS scan (where they take cells from the placenta and can be done from around 12 weeks). They managed to schedule me an appointment for the following Monday. I was told that the sample would be tested initially for the 3 main chromosomal abnormalities (Downs, Edwards and Patau’s syndromes) and the results would take 48 hours to come back. They would then test all of the chromosomes for any other abnormalities, however, these results would take up to 2 weeks to come back.

We were absolutely devastated! We had never heard of the condition. What were we going to tell people and when did we tell people. Everyone knew we were going for our first scan, they would be asking questions. At this stage we didn’t know if our baby would live or die. Every time we talked about it ourselves we would both end up in tears…it was a very emotional time for us. All of our family is in Australia so that weekend we started making calls back home. We asked people not to tell others, that we would tell who we wanted when we were ready. It was the hardest thing we had ever had to work through.

After the test on the Monday we were called on the Wednesday to hear that things looked good and that they couldn’t find any problems. They asked if we wanted to know the sex of the baby and we found out that we were having a little girl. We had chosen a name so from that day forward we always referred to her by her name, Grace.

During the pregnancy we were scanned every 2-3 weeks. As things progressed Grace appeared to be growing normally. At 20 weeks they performed a full cardiac scan. Her heart appeared to have developed well…another tick off the list! Although a hole in her heart (VSD) was identified after she was born. This is now being monitored.

At 28 weeks we transferred over to the Queen Mother’s Hospital, Yorkhill, Glasgow. The main reason for this decision was that we knew Grace would be transferred to the Kids hospital straight away and the QMH and the Sick Kids hospital are co-located…joined by a walk way so whilst I recovered I could also be near her. Over the remaining 10 weeks we were scanned several more times by our obstetrician. We discussed the birth with him and, whilst he said that we could have her naturally, he recommended a section birth. He had delivered Exomphalos babies before, both naturally and via C Section, so we trusted his expert opinion. We knew he had our baby’s best interests at heart and so went with his recommendation. I actually found this decision for a section birth helped alleviate any fears of something possibly going wrong.

During the lead up to the birth we also met with a Paediatric Surgeon who discussed methods of repairing the exomphalos. He did emphasize, however, that whilst he was suggesting possibilities nothing was definite until the baby was born. He said that once born he, or another surgeon, would assess her and then make the final decision regarding treatment.

Just before her delivery we were approached by Scottish TV who asked if they could follow her story. We agreed to do this because we thought it might help others in the future. We didn’t know about this condition as I am sure many other Exomphalos parents didn’t.

Grace was delivered at 37.5 weeks at 12.26pm on the 26th April, 2005. She weighed 6lbs 10oz – a good weight. There was a whole team of people in the delivery room, including the film crew. As soon as she was delivered she was taken by the paediatric team to a corner of the room where she was wrapped in surgical cling film to protect the organs. After a brief hold, which was amazing!, she was taken to the Neo-natal until for further assessment. My husband also went down shortly afterwards to see our baby girl. After my recovery I was also taken down and at least I finally got to have a good look at little Grace. Later that afternoon Grace was transferred to the Neo-Natal surgical unit in the Royal Hospital for Sick Children.

The Consultant Surgeon chose to use a method called Paint and Wait as opposed to a primary closure. He later told me that after assessing Grace, and before speaking with us, he went away and did his own research before making is decision re repair. He told me that whilst a primary closure is often recommended he had decided to use this more conservative method after much discussion with other senior consultants. ‘Paint and Wait’ is where a cream (Flamazine) is painted over the exomphalos each day and then dressed. The cream promotes skin growth and slowly the skin grows over the exomphalos. This process is fairly long but the results are great.

At two weeks old Grace became septic and was taken into Intensive Care and fully ventilated. This was an awful day and one where we thought we were going to lose her. However, she responded well to a course of antibiotics and was off the ventilator 48 hours later.

As time went on she had another couple of spells on oxygen but seemed to recover again. We were told that her lungs were probably smaller as a result of the Exomphalos. However, just as we were about to be discharged she picked up a virus which put her back on the oxygen. She was finally discharged on home oxygen.

Grace stayed in the hospital for a total of 5 and half months. It took about 3 months for the skin to cover the Exomphalos and the virus kept her in hospital for another 2 months. It was a long time and I wondered if we were ever going to get out. Finally the day came and we were discharged.

On the 8th June, 2006 Grace went in for closure surgery. It was a difficult time but worth it. Everything went really well and she was out of hospital in just over a week. Her tummy is now flat and looks great. (Photo 2)

Grace is now just over one and is a healthy, active and happy little girl. She has developed normally and is doing everything a baby without any issues should be doing. She is a true fighter, strong willed and full of determination! She is truly remarkable! She still has issues with feeding orally and is being fed via a Naso-gastric tube, feeding issues are not uncommon with these babies, but she will get there.