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World Prematurity Awareness Month! Claire's Journey...

Each year more than 15 million babies are born prematurely 1 in every 13 babies born in the UK will be born premature (before 37 weeks of pregnancy).

World Prematurity Awareness Month!

NEC UK is honoured to share the stories of people impacted by Prematurity & Necrotising Enterocolitis. This is Charlie's story Twins born at 36+6wks!

It is important to mention that not all premature babies will need to be cared for in a neonatal unit. Many babies born prematurely will be born late preterm (at 34-36+6 weeks of pregnancy), and some of these may not need specialist care on a neonatal unit although problems may develop days or weeks later. I share Charlie’s Journey with you today to raise the awareness of NEC affecting babies born late preterm for us (36+6 weeks).

Charlie & Harry are identical twins born at 36+6wks January 2016

During pregnancy at my 20 weeks scan we were informed twin two (Charlie) appeared to have his stomach on the opposite side of his abdomen. Receiving this news was nerve-racking and throughout the rest of the pregnancy i had multiple scans on both babies to ensure they were developing OK. No further complications were identified however we were advised to have them induced around 36wks and to under go further scans post birth.

The plan was to be induced as close to 36 weeks as possible, however after a long induction of three days the boys were delivered via an emergency C-section at 36+6wks due to complications relating to Pre-eclampsia.  Both boys were healthy and thriving and during their first few hours they endured multiple cheeks and had to have a genetic test to ensure there were no further links relating to either of their organs.

The boys were healthy and no complications were found, therefore we were all discharged after three days. An appointment was arranged at a later date for both boys to have an ultrasound scan to view their organ placement.  It was 4 ½ weeks post birth they had their ultrasound scan… During this scan we were informed Harry’s organs were in the natural position, however Charlie did in fact have his stomach on the opposite side and there was no cause for concern as no other organs were affected.

Just three days later on the evening of the 27th February while changing Charlie’s nappy he began having bloody loose stools. The only other symptom that day he was extremely gassy all day and appeared uncomfortable. We called the 111 service who advised we take him to our local 24hr care department to be assessed. 

Charlie was assessed and they sent him home after a quick examination diagnosing him with a sickness bug. Reluctantly we went home at midnight and put the boys down to bed, by 6am Charlie became very unwell being sick green/yellow bile and passing more bloody stools, that’s when we called for an ambulance, I just knew this was something more than a sick bug. While waiting for the ambulance his abdomen began to extend and he turned a shade of grey.

The ambulance arrived and he was rushed back to the emergency department where he was scanned and diagnosed with signs of sepsis caused by what appeared to be a bowel obstruction.

Me and Robert were advised to leave before Charlie to sign paper work for surgery on his arrival to at Queens Medical Centre Nottingham. Charlie was prepared and transferred to Queens Medical Centre and went straight in to theatre the moment he arrived, we gave him a kiss and said our goodbyes not knowing if this was going to be the last time we would be seeing our little boy.

Post-surgery he was Intubated and bought back to the Intensive Care Unit. The Surgeon explained to us Charlie is very critical he had the worst case they had ever seen of Necrotising Enterocolitis, they worked extremely hard to salvage what they could of his small bowel. They explained that the next 24hrs were critical and advised we contact family to explain and prepare them for the worse. Charlie was monitored over the next few days and prescribed a number of antibiotics in the hope that his body would fight the infection so they could salvage more bowel. We were told It was certain that he would have to go back for further surgery once he was more stable.

Every day for what felt like a lifetime we were told he is not out of the woods yet! During the first two weeks Charlie underwent two life saying surgeries to remove all the damaged sections caused by Necrotising Enterocolitis. After being taken off the ventilator he then spent a further three days on the high dependency unit until he was stable enough to move to a specialized ward, little did we know at this point that it would become our home from home for the next 9 months.

While Charlie was in hospital, he had a scan of his liver, kidneys and pancreas due to increased jaundice levels. His Gastroenterology team wanted to make sure there were no underlining cause for his jaundice levels other than his TPN as the main cause affecting his liver. 

This is when we were informed in fact Charlie had Situs Ambiguous/Hetrotaxy syndrome. The sonographer was surprised to learn that all of his abdominal organs were on the opposite side, his left lung is his right lung and the right is his left, His stomach was on the opposite side along with a midline liver and multiple spleens. This is when we realised that is was likely his Intestines were too and could have been the main cause for developing Necrotising Enterocolitis, due to a twist or improper positioning of the intestines at birth.

To date (2020) Charlie has had 5 lifesaving operations on his small bowel including the STEP Procedure to lengthen his remaining bowel. Charlie was initially left with 25cm of Small Bowel, he had to have his appendix and IC Valve removed. Thankfully all of his Colon remained healthy. Due to the STEP procedure in 2017 he had a further 15cm removed and the remaining bowel was lengthening to 45cm.

Initially Charlie spent a total of 10 months in hospital before his discharge on December 19th 2016 just in time for his first Christmas at home as a family of four. Since then he has had multiple hospital admissions relating to complication of Short Bowel Syndrome, TPN and central line Sepsis Protocols due illnesses.  

Charlie is now a very cheeky four-year-old and full of life! He and his twin brother Harry both attend school together. Due to the damage caused by NEC Charlie is 15hrs TPN dependent, on an overnight milk feed via his Gastrostomy with X3 Daily Blended diet bolus feeds. He also requires a cocktail of medications to manage his condition: Pollysplena, Anaemia, Short Bowel Syndrome, Previous TPN associated Liver failure & Acid reflux.

For a very long time I had been angry and would asked myself "Why Charlie" "Why us as a family" I would question what have we or Charlie done wrong to be handed such a life! These questions will still pop in my head from time to time however I feel stronger now in challenging my own thoughts and have accepted that this is normal in the way I feel going through such circumstances. I’m not going to lie there has been many times I have had spells of depression, anxiety, PTSD due to all that has happened. I manage this with support of family, friends and social media support groups like NEC UK. 

NEC UK has been detrimental in improving my mental health by speaking with others who have been through what I have has been somewhat been a comfort to me.  I found NEC UK when Charlie was in hospital and was so thankful to have other people to talk to who had been in a similar situation that is why I applied to become a parent volunteer at the beginning of 2019 and now a Trustee member.

If there is one thing in life I have to do now it is to help the fight against NEC!

Thank you for taking the time to read our journey.

X Claire X 

You can join our movement to by following us on Twitter, Facebook, Instagram, subscribing to our email list, and making a donation. You can also read more stories from families impacted by NEC on our Family Stories page.

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