It had taken us nearly 2 years to get pregnant with Ben following a diagnosis of polycystic ovarian syndrome and 2 early miscarriages. Following some bleeding very early on we were told at a dating scan at 10 weeks that it looked like the baby’s intestines were outside the body, but that there was still time for it to descend into the abdominal cavity. Since we had a nuchal scan booked for 3 weeks time we were told it would be reviewed then. We were so pleased that the baby was alive that we put it to the back of our minds.

At the 13 week nuchal scan at the Rosie Maternity Hospital, Addenbrookes all went well, the nuchal measurement was low and nasal bone seen, then our consultant Mr Lees confirmed that the in fact the liver was outside the body and the condition was called Exomphalos. We were told about the link with chromosomal defects and advised to think about having a CVS.

We drove home in a daze and spent most of that weekend in tears. We were booked in for another scan the following week and decided to have the CVS test. At the scan we met Mr Samuel who was a paediatric surgeon. Also at the scan was a doctor from the NICU and an expert in nuchal scans. Mr Lees repeated the nuchal scan which again was a good result, and all other organs were checked and were all functioning and in the right place. The baby was lying too close to the placenta so the CVS couldn’t be done but given the good nuchal result Mr Lees told us to consider an amniocentesis at 16 weeks subject to another anomaly scan and a foetal heart scan with Mr Yates, a heart specialist from Gt. Ormond Street Hospital.

The scan at 16 weeks went well and we found out we were expecting a boy – we decided to call him Benjamin. We were told that from the scan the chances were that the Exomphalos was an isolated problem and that the baby was normal, but they could only be 95% sure. The heart scan was tense but was also fine, no defects found so we decided not to have any invasive testing unless anything abnormal was found in future scans. We had the regular 20 week anomaly scan and another scan with Mr Lees and Mr Samuel at 23 weeks where we discussed the birth and plan for surgery. We then had growth scans every 2 weeks and each scan showed Ben was a little small but doing fine and no other problems were detected. We then had scans every 2 weeks for the rest of the pregnancy including another successful foetal heart scan at 28 weeks.

Mmmm.... I like this sleeping business!

We went in for the induction on the 6th as planned but as I was too favourable they were worried I’d deliver in the night when the paediatric team wasn’t there so in the end they broke my waters the following morning. After a 9 and a half hour labour Benjamin David Wakefield was born at 6pm on the 7th August 2006 weighing 6lb 1oz. I had a quick cuddle and then he was whisked off to the NICU with my husband in tow. After I recovered from the delivery I went up to the NICU to see Ben, he was just perfect, he was breathing on his own and I didn’t even notice the Exomphalos - all I could see was how beautiful he was.

The following day Ben had his operation at just 18 hours old, the operation was successful although it took longer than expected because the membrane was stuck to his liver. But he was left with an inch long scar and a neat little belly button. Eight hours after the operation Ben started trying to breathe for himself so he was taken off the ventilator. Then the following day we both had our first cuddle with him, it was a wonderful moment for both of us, to finally have our precious son in our arms and looking up at us. When we went back to see Ben that evening to our delight he had been moved to a lower dependency room in the NICU and had had his first bowel movement!

Ben at seven weeks

Ben is now 17 weeks old and thriving. He’s full of smiles and has discovered his voice, he likes nothing better than to coo at his toys! He has just started weaing on to solids and is over double his birth weight. Ben had a blood test at birth and we were thrilled to find that his chromosomes are perfectly normal – well he was always perfect in our eyes.

The staff at the Rosie Maternity Hospital, Addenbrookes were brilliant. They took fantastic care of us throughout the pregnancy, delivery and Ben’s recovery and we can’t thank them enough. He has had a follow up appointment with the neonatal team and has been dischargedand has also had a follow up appointment with his surgeon Mr Samuel who is happy with Ben's progress and will see him again when he's a year old.

The GEEPS website was a godsend while I was pregnant and I took comfort in reading all the success stories, which is why I wanted to share Ben’s story. Good luck to everyone going through this journey, I hope you can take inspiration from Ben.