Rare Disease Day 2019

Updated: Mar 6, 2019

Today is Rare Disease Day 28th February 2019, Today is also the 3rd Anniversary of my son Charlie’s Journey of Surviving Necrotizing Enterocolitis

Charlie was born at 36+6 and weighed 5lb1 he is Twin Two of identical Twin boys. Both boys were born healthy and were discharged from the hospital at day 3.

Just short of five weeks old Charlie developed Necrotising Enterocolitis (NEC) Our lives were completely torn apart.

Charlie was Intubated for the first three weeks on the Intensive Care Unit taking each hour and day at a time, it has been the most difficult thing to date we have had to deal with. Every day for what felt like a lifetime we were told he is not out of the woods yet!

As a way of coping we wouldn’t let family or friends visit him on the ward as we didn’t want to face the facts that our little boy might never make it home. To us letting family and friends visit felt as if we were asking them to come and say good bye!

During the first two weeks Charlie underwent two life saying surgeries within a matter of days to removed all the damaged sections caused by Necrotizing Enterocolitis.

After being taken of the ventilator he then spent a further three days on the high dependency unit until he was stable enough to move to a specialised ward, little did we know at this point that it would become our home from home. Charlie spent a further 9 months in hospital before his discharge on December 19th 2016 just in time for his first Christmas at home as a family of four.

Charlie to date has had 5 life saving operations on his small bowel including the STEP Procedure to lengthen his bowel. Charlie initially was left with just 25cm of Small Bowel and due to the STEP procedure, it was lengthening to 45cm. Charlie has also had four mini operations to replace damaged Central lines and to insert a Gastrostomy button. He is 14hrs TPN dependent, 12hrs PEG feed over night via Gastrostomy with Daily Blended diet bolus feeds. He also requires a mini cocktail of medications to help with his conditions.

Charlie has previously had 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.

Charlie also has a rare condition called Heterotaxy syndrome with polysplenia. Heterotaxy syndrome with polysplenia is a congenital condition in which the major visceral organs are reversed or mirrored from their normal position. Charlie's Heart remains in the correct position however his abdominal organs are the opposite. Due to his condition he requires a permanent course of antibiotics to reduce the chances of infection, due to the Polysplenia he has multiple small spleens that are weaker and at a greater risk of rupturing.

We don't hold Charlie back and let him experience life to the full, he attends Nursery two days a week with his Twin brother so that he can be just like any other children of his age and we go out to play centres etc you name it!

Charlie has a Twin brother and basically what Harry gets Charlie will get so we and his team believe in not holding him back and living life to the full as others would. Charlie and Harry are our extraordinary little boys and are full of love especially for each other.

Charlie is still on a roller coaster of a ride and we experience many highs and lows daily as a family. 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.

This past year i have come to terms with discussing our journey I feel I am ready in accepting 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 circumstances.

These past three years have been difficult not only for Charlie however for his Twin brother Harry, their Farther Rob who has also faced his own difficulties in the fact he too is disabled and there is little he can do to help me with Charlie's condition, he helps us remaining by our sides and working all the hours under the sun to keep this family a float. We love you Daddy so much for that x

Me as his mother have found it extremely difficult in accepting my child has a lifelong disability that I cannot do anything about. I would literally take all of this from him and have it myself if I could. I have and will continue to face spells of depression, anxiety, PTSD due to 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.

You become OCD about everything, everything has 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 have to live a regimented life to ensure I fit it all in...

I share our Journey through our Family web page and on our family Facebook page in the hope to raise awareness of the devastating effects of Necrotizing Enterocolitis. I hope by reading our Blog and Charlies Journey you will consider Donating Blood or sighing up for the Organ Donation register. Charlie wouldn't be here today without your blood and for all of those that donate blood and plasma we are truly thankful to you and forever in your debt. Unfortunately, due to the nature of Charlie's condition we know 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 may one day require one.

Thank you for taking the time to read our Blog

Sending love and well wishes to you all x

#Rarediseaseday2019 #NecrotizingEnterocolitis #Shortbowelsyndrome #TPN

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The Radford Family Surviving Necrotizing Enterocolitis is a family and life style blog designed and created by Claire Radford All rights reserved.  All content provided on our site is for informational purposes only. I am not a medical professional, nor do I claim to be. Always seek medical advice from a trained & licensed physician please see Terms & Conditions & Site Rules for further information.