Jo's experience

My pregnancy with Jack was a normal pregnancy, morning sickness came and went, I had a small bleed around 13 weeks but all in all I felt great.

We went for my 20-week scan, excited to find out if we were team blue or pink. I had a 7-year-old boy anxiously waiting to hear if he was having a baby brother which he wanted or a baby sister which he didn’t! It hadn’t occurred to us there may be a problem, why would it?

We realised pretty quickly there was a problem as the sonographer quickly turned the screen that we were watching off and kept telling us she had to take more measurements before being able to tell us more. I remember thinking “oh my god, is there 2 babies??” because twins run in both sides of my family and in my partners family. But something in her face told me it wasn’t good.


She finally finished and said, “I need to get the doctor”. I knew then there was something seriously wrong. The doctor came in and scanned me some more, they were muttering words we didn’t understand and I was begging them to tell us what was wrong. The doctor finished up and waited until I was cleaned up before telling us there was an issue with babies tummy, something called exomphalos and we were to go to a separate room to talk. As we walked down the corridor to the meeting room I walked past lots of women waiting for their scans, because we’d been so long there was a bit of queue and I was trying my best not to cry but failing.

We waited in the room for the doctor to come in and it seemed like the wait for hours when it was probably only 15 minutes. My mind was screaming so many questions but one kept repeating - would my baby die?

The doctor came in and told us that baby’s tummy wasn’t formed properly and because of this some of his insides were outside. He told us that almost all babies with this condition also have chromosomal abnormalities, the best of which being Downs Syndrome, the worst being fatal. He told us that our baby would almost certainly be “incompatible with life” and that even if they made it to term, our baby would almost certainly die soon after being born. He advised us to terminate immediately.

We were left alone to discuss what we wanted to do, told that if we opted to terminate we would immediately go to the larger local hospital that day.

It felt surreal. Why was this happening? Why us? Without any real information we made the decision that a termination was not an option - whatever was going to happen would happen but I could not and would not terminate. We left the hospital that day with no more than an appointment in a few days time at our larger local hospital for a more in-depth scan and a consultation with a different doctor. I immediately googled Exomphalos when we got home, which was difficult because I had no paperwork, no leaflets, nothing and I wasn’t sure how it was spelt! What I read online filled me with even more fear and dread.

Luckily when we went to the larger hospital the consultant there was a lot more positive. He spent a lot of time explaining exactly what exomphalos was, about the different chromosomal issues that are associated with it and we were offered an amnio test. We declined at that stage because of the risk of miscarriage - we had already decided no matter what the test would say we would not terminate so didn’t see the point of adding more risk to our baby. We also found out we were having a boy - we’d forgotten to ask at the 20-week scan!

From then on I had regular scans every 2 weeks. Baby was growing well, however, he started having markers for Downs Syndrome at 28 weeks. At 32 weeks the consultant was quite sure he had DS and we decided to have the amnio at 34 weeks, we felt we needed to know for sure so we could learn about it. Our elder son has autism and we felt we needed to prepare him also. The risk of early labour meant I had to have steroids before having the amnio but baby was a good weight and the consultant was confident if he had been born early he would be ok.

When I got the call to tell me the results had come back all clear for all syndromes they test for I cried again - happy tears.

At 38 weeks and 5 days I went into spontaneous labour and 2 hours later Jack came into the world. He wasn’t breathing when he was born and needed a lot of help. The room was full of people and I didn’t even get to see him before he whisked off to NICU and it would be another 7 hours before I was taken to him.

At 14 hours old Jack had his surgery, full repair and closure. Before going down to theatre his surgeon asked the nurses to let me have a cuddle, my first cuddle but not a proper cuddle because he had wires everywhere and his tummy was wrapped in clingform.

We were told to prepare for a 3 month stay in hospital. My eldest son went to live with my parents. We had accommodation at the hospital and spent as much time as we could with Jack. After 5 days I had my first real cuddle, skin to skin. I also tried breastfeeding him and he latched on like he’d been doing it always!

Jack’s surgery had been uncomplicated and he recovered better than expected. Within 10 days he was in the nursery in NICU, the only wires he had was his SATS monitor which was only used every 4 hours to take his obs. At 12 days old we brought Jack home, much to the amazement of everyone involved with him.

Unfortunately things didn’t go according to plan as Jack grew. By his first birthday, we knew he having issues with his tummy, he would have bouts of sickness and cycles of not pooing. We were back and forth to doctors and hospital and they all said the same - Jack was having episodes of gastroenteritis. I didn’t think they were right and did my own research and spoke to other parents online. Jack’s symptoms were those of adhesions (scar tissue) from his surgery at birth. Jack’s sickness bouts were getting more frequent, by the time he was 2 it was happening every 4 weeks and he was also vomiting green bile.
Again we kept being told it was gastroenteritis, I kept saying I though it was adhesions causing blockages in his small bowel and no doctor would listen.

Shortly after Jack’s 2nd birthday, in May of 2015 he had a catastrophic small bowel obstruction. Unfortunately the blood supply to his small bowel was cut off for so long his bowel died. By the time he went to surgery his bowel couldn’t be saved and he’d developed sepsis. He spent a week in an induced coma while doctors waited to see if his bowel could be saved. It could not and Jack lost around 80% of his small bowel.

Again he amazed doctors and fought the sepsis. He spent a further 5 months in hospital with 2 stomas. He had his bowel reconnected and we were told he would be reliant on TPN for many years, possibly even for life due to missing so much bowel. Well, Jack had other ideas, and 4 weeks later in October 2015 we left hospital TPN free.

Jack is a miracle. He amazes me every day. If you saw him playing in the park you’d never know he missing almost all of such an important organ! Jack gets almost of his nutrients and hydration from special milk which he drinks and he eats meals of blended vegetables and meat. We have to be extra careful with him, when he gets colds and viruses he often needs to be admitted to hospital for a few days to have IV fluids because he gets dehydrated so easily. He also has gallstones from when he had TPN and because surgery to remove his gallbladder would be major because of his extensive surgery he’s had already we are ‘watching and waiting’. 

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