GEEPS logo
Experiences

 

Elliot was born at 36 weeks by emergency caesarean section. Through the many ultrasounds we'd had since diagnosis at 20 weeks we knew that his gastroschisis was severe. He weighed just 5lb and both his small and large bowels were on the outside, along with his stomach and gall bladder.

Amazingly our excellent surgeon managed to get everything back in the defect hole itself (approximately 4cm diameter) without any further incision, this is quite a pioneering method of closure, often controversial.

The first week after the primary closure

  Elliot at 2 weeks    

was up and down, we knew we had to 'rest' his bowels for a while, however we weren't expecting the added worry of his breathing difficulties Elliot's lungs collapsed four times and he was sedated and ventilated for ten days.

After two weeks his general condition was improving and he even started to gain a little weight after being on TPN since he was three days old. However his bowels were showing no signs of activity at all, but we were told that this was expected and it could take a couple of weeks for things to settle down.

At three weeks old and still in the Neonatal intensive Care Unit, the doctors decided to start Elliot on drugs to speed up his gut, and also began to 'wash out' his bowels

An agonising three weeks later and still he had never opened his bowels on his own, we now knew something wasn't right. He was transferred to Hull Royal Infirmary where the doctors decided to investigate further.

Now six weeks old, still on TPN he had barium studies which showed some problems, basically there was a blockage within his small bowel, and the
possibility of other unknown problems.
Elliot at 2 weeks

Elliot had 3½ hours of surgery and a 24cm piece of small bowel was removed,
his appendix removed and part of his bowel was fused onto his bladder, he also had a lot of adhesions.

A week after this surgery Elliot was back in theatre to have a Broviac Line inserted to his main artery (to deliver the TPN more effectively). Recovery from the bowel surgery was slow with yet another set back, from routine swabs we learned he had also been diagnosed as MRSA positive. This is known as a H.A.I (hospital acquired infection), which is a condition that is resistant to many popular drugs, and can cause severe problems with surgical patients. Thankfully this wasn't the case with Elliot, and it didn't seem to cause too many problems, although he is still being monitored and screened.

We had just started to introduce a Nasogastric feed at 2ml per hour, which he wasn't tolerating, when Elliot suddenly became very ill. After an emergency X-ray the surgeon told us her worst fears, he had an infection of the bowel known as NEC (Necrotizing enterocolitis). A life threatening and serious condition. The hope was to flood him with antibiotics and observe him, however his condition deteriorated and we were told a 2am, that unless he was taken to theatre to relieve the pressure in his abdomen he was likely to die.

 
At this point we were given a 50/50 chance of survival. After a further three hours of surgery, Elliot was transferred back to intensive care, ventilated and so swollen we didn't recognise him. He had another small re-section of diseased bowel just 3cm, and an Ileostomy - small bowels brought to the surface of the abdomen and stitched there. He made it through the next 24 hours needing lots of transfusions, and pulled through the worst if it. He remained in I.C.U for 5 days and he was even smiling at us through his oxygen head box.

In the panic to save him during the emergency surgery his Broviac line came out, so a week later he had the 2nd inserted in theatre although requiring a general anesthetic it's only a 30 minute procedure.
   
Elliot at 2 weeks
At 12 weeks finally he was making progress recovering well from the surgery and after lots of stopping and starting with his feeding he was finally tolerating his Nasogastric continuous feed. The plan from here was to introduce small bolus feeds and then onto bottles.

Once Elliot was taking bottles every two hours, the surgeon decided to reverse the Ileostomy instead of leaving it for a year or so as initially said. It was risky, hoping his bowels would function on their own so soon, however our surgeon thought this was for the best. We had just began to get used to changing bags on his abdomen and handling his bowels when at 14 weeks he went to theatre for the 6th time. All went as planned, although we were told he had lots of adhesions, and time would
tell if they would cause further problems.

Elliot had 96 days of TPN in all, quite a lot and his liver was beginning to suffer, he had become very yellow and jaundiced, so thankfully he came off the TPN just in time. On the day Elliot was four months old he came home for the first time, which was an amazing - yet anxious time for us.
 

Elliot aged one with big brother William
He was on a special formula milk, and had to have a very strict dairy free diet. He seemed to be doing so well and 'looked normal' as people kept telling us. Our response was he is normal, he just had some plumbing problems!!

Elliot is now 15 months, and although he still has some discomfort and very loose bowels, he is an adorable, happy and very active little boy, who enjoys a normal diet without any additives or medication.

A living nightmare is how I would honestly describe those initial months with one thing after another. But now a year on, it is so rewarding to see him developing.

Poorly babies seem so weak and helpless, yet they fight as our son did, as many before him have and many after him will.