Today is Charlie’s 4th Anniversary Surviving Necrotising Enterocolitis (NEC)
We continue to share Charlie's journey to raise the awareness and the damaging effects of Necrotising Enterocolitis (NEC).
Charlie is our courageous little boy and really lives his life the best he can, while coping extremely well with the lasting effects of NEC, Short Bowel syndrome, Intestinal failure Anaemia, history of intestinal failure associated liver disease, TPN and PEG-J dependent and Heterotaxy Syndrome with Polysplenia.
Charlie on the Left & Harry on the right
Charlie and his twin brother Harry were born at 36+6 weighed 5lb1 and 5lb 6. Harry Twin One & Charlie Twin Two of identical boys. Both boys were born healthy although Charlie had been diagnosed at our 20 weeks scan with his stomach on the opposite side of his abdomen needing further tests at birth. After just 3 days in hospital post an emergency C-Section we were all discharged home.
We will be sharing our Journey via social media today and tomorrow as Tomorrow is “Rare Disease Day” it is usually on the same day of Charlie’s anniversary however this year it has been moved from today to 29th to fall in line with the rarest day of the year…
Charlie has a rare condition called Heterotaxy syndrome, Heterotaxy syndrome is a condition in which the internal organs are abnormally arranged in the abdomen. For Charlie his condition is quite complex as his heart remains in the correct positioning however the arrangement of his abdominal organs are mirrored, it affects his lungs, liver, intestines and has multiple spleens (Polysplenia). Due to Charlie’s Heart remaining in the correct position to the left this means his condition is even more rear therefore he requires a permanent course of antibiotics to reduce the chances of infection, due to having multiple spleens (Polysplenia) he is also at a greater risk of one of them rupturing at any time.
I fully believe this rare condition is the main cause for Charlie developing Necrotising Enterocolitis as he would have been at a higher risk for intestinal twisting. I feel he had been let down by the healthcare system at our local hospital and this had been missed at birth and also unnoticed just days before he developed NEC on abdominal ultrasound scans to check on his condition and organ placement. The day of the ultrasound scan we were told Charlie only had his stomach on the opposite side and all other organs were in the correct position (at the time this made no sense to us). It was only months down the line post NEC on an abdominal ultrasound scan to check the condition of his liver and kidneys we in fact found out he had Heterotaxy syndrome and all of his abdominal organs were unusually arranged.
On the night Charlie became sick he was taken to hospital due to being sick green bile and having bloody stools. Our fears were dismissed, and he was wrongly diagnosed with sickness and diarrhoea and we were sent home at midnight. Just hours later he drastically got worse, he turned grey, his stomach dilated and when I picked him up out of his moses basket he started being violently sick green bile and bloody stools were just pouring out that’s when I called for the ambulance and he was rushed to A&E at our local and then transferred to Queens medical centre. Visit our Blog if you wish to read the full version of events unfold on that dreadful day.
Necrotising enterocolitis (NEC) is a serious condition, where tissue in the bowel (small and large intestines) becomes inflamed. NEC can make a baby temporarily unable to take milk, and at its worst it can cause parts of the bowel to become so damaged that tissue within it dies.
Charlie was on life-support for the first three weeks on the Intensive Care Unit he was then later moved to our home from home ward D35 at QMC Nottingham where he spent the next 9 months of his amazing journey.
Charlie to date has had 5 life saving operations on his small bowel including the STEP Procedure to lengthen his bowel back in 2017. Charlie initially was left with just 15cm of Small Bowel and due to the STEP procedure, it was lengthened to 45cm. Charlie has also had numerous mini operations to replace damaged Central lines and to insert a Gastrostomy button, remove the G-Button and replace with a PEG-J. He is now 4 years old and has Short Bowel Syndrome, 15hrs TPN dependent, 15hrs high calorie Milk feed overnight via PEG-J. He also requires a mini cocktail of medications to help with his conditions.
Charlie has a history of intestinal failure associated liver disease due to TPN Dependency and the nature of his condition. Since his most recent surgery he is overcoming this and is regularly monitored by weekly blood tests. Charlie suffers with Anaemia due to his condition that means he requires regular Blood Transfusions and weekly blood test to monitor this.
This year has been a good stable year for Charlie and his twin brother Harry, they have both achieved so many things together over this year, Potty Training (never thought this would be possible with Charli), fabulously counting to 30 and beyond, spelling and writing their own names, having full conversations with both of them, it has been so special watching them grow and develop.
Watching their little minds taking it all in It really has been amazing to see.
In those early days you just cannot see the future and struggled to have any hopes of enjoyment. All that would go through our minds would be worry, worry for the future, worry for school, worry for potty training, worry for development, how would we cope on TPN, PEG Feeding, coping with twins!!!… Believe me once you are home you find your feet and fall into your own routine, I’m not saying it's been easy at all far from it! as I’ll further down...
We let Charlie experience life to the full, there are so many things he cannot do because of his medical condition and devices however we do let him participate in everything he possibly can. He attends Nursery with his Twin brother and really enjoys making new friends and playing with other children of his age, we go out to play centres, walks round the woods and have many adventures together with our family dog Millie.
Charlie is still on a rollercoaster of a ride and we experience many highs and lows daily as a family there are noticeable behaviour affects and we are currently in the process of being assessed for ADHD/ADD. Having the amazing support of Family and close friends have helped us tremendously. We have also met some amazing families along Charlie's journey while in hospital and we thank you to for all of your ongoing support, advice and encouragement.
Being part of the support groups on Facebook have also supported me and our family more than you would ever know. I may not get the time to update them or check in with people however others questions, advice and tips have helped me as a mother come to terms and cope with Charlie's Conditions. You are all so Amazing.
Please look after your mental health!
To help me with coping and coming to terms with such a drastic change to our life over these past years, talking, speaking with other parents and being open about how I am feeling have all helped me come to terms with that this is our life now. I now accept Charlie's condition as 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 life changing circumstances.
I have and will continue to face spells of depression, anxiety, PTSD of all that has happened and Still to this day I experience anxiety and panic somewhat when I hear the sounds of an Ambulance. That is one ride I will never forget and will stick with me forever. I became OCD about everything, everything had to be done in its order throughout the day to ensure it is all done, not just Charlie's cares I mean literally everything: TPN, medication, PEG feeds, Charlie Dressing changes, washing dressing the twins as well as myself, caring for Robs needs, cooking, cleaning, ironing, spending quality time with the boys you name it, I really had to live a regimented life to ensure I fit it all in...
Now the boys are older I feel more relaxed and we can enjoy our time together. My life and attitude really has changed since joining the NEC UK charity. Having support from the charity has gave me a new focus and wanting to share our journey, support others and help the fight against NEC.
Hoping one day there will be a world without NEC!
I share our Journey on Facebook and social media in the hope that you will read our journey and share it too, let's together increase the awareness of NEC and the damaging effects caused by this devastating disease. Please feel free to ask questions or even share your journey remember we are all here to support each other.
Unfortunately, due to the nature of Charlie's condition he may one day require an organ transplant. I please ask if you would consider joining the Organ donation register or even discuss this with family as you never know yourself or somebody close to you who may need one!
Charlie wouldn't be here today without blood donations and for all of you that donate blood and plasma we are truly thankful to you and will be forever in your debt. Since Charlie became ill myself and the family have been donating blood, if anything can come from this post please consider Donating Blood or signing up for the Organ Donation register.
Thank you for taking the time to read our Journey
Sending love and well wishes to you all x
Website Blog: https://www.survivingnecrotizingenterocolitis.com
Please see all the following links for further information