💚💙Necrotizing Enterocolitis Awareness Day💚💙

Updated: Jun 13, 2019

Necrotizing Enterocolitis (NEC)

Charlie's abdominal scan showing NEC

NEC is a serious disease that can

progress very quickly. It is highly

important to get treatment right

away if your baby is showing

signs or symptoms of NEC.

Necrotizing Enterocolitis is a rare

disease that develops when the

tissue in the inner lining of the small

and/or large intestine becomes

damaged and begins to die.

If left untreated quickly a hole may form in the wall of the intestine which can then leak into the abdomen and cause widespread infection. If this was to happen this is then considered a medical emergency were immediate treatment is required. Babies can become sick very quickly with NEC, having seemed well hours before.

Follow the Link to our web page for further information on NEC: https://www.survivingnecrotizingenterocolitis.com/necrotizing-enterocolitis



Charlie’s Journey

Charlie our NEC survivor, our little miracle boy defied all odds and survived this dreadful disease that takes so many innocent babies’ lives.


NEC UK “Necrotizing Enterocolitis is rare in the general population of babies but more common in neonatal units and is diagnosed in 1 in 250 live births. You may be surprised to learn more babies die from NEC than all of childhood Leukaemia

Necrotising Enterocolitis (NEC) tour our lives apart on the 28.02.2016 Charlie was just short of 5 weeks old. Everything from this day forward have never been the same again. Not only does the condition change your child's health it completely affects every aspect of theirs/your life and at home including testing the strongest of relationships with family and friends.

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. Thanks to all of the amazing staff who supported us throughout the full 10 months we couldn't have done it without you. x

We cannot believe that this is common in premature babies and babies with underlying conditions relating the abdominal organs. I strongly believe More awareness could have prevented this from happening or developing as severe as It did for Charlie.

Charlie now lives with Short Bowel Syndrome and to date he has had 5 life saving operations on his small bowel, stoma, stoma reversal, jejunostomy, jejunostomy reversal, including the STEP Procedure to lengthen his bowel. He initially was left with just 15cm of Small Bowel and due to the STEP procedure, it was lengthened to 45cm. Charlie has also had four mini operations to replace damaged Central lines and to insert a Gastrostomy button. He is now 15hrs TPN dependent, 12hrs PEG feed overnight via Gastrostomy with Daily Bolus feeds of blended diet. He also requires a mini cocktail of medications to help with his conditions. Charlie has 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.

What makes Charlie that little bit more special and rarer, he has Situs Inversus of the Abdomen and Polysplenia. Situs Inversus of the abdomen and 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 to the left meaning his condition is even more rear. This itself is a rare condition and requires Charlie to be on a permanent course of antibiotics to reduce the chances of infection and the possibility of them rupturing.


NEC UK “NEC is mostly seen in premature, low birth weight babies and in much fewer instances of babies born at term It’s estimated 1 in 10 term babies develop NEC, majority but not all term babies will have underlying problems such as heart conditions and abnormalities of the bowel”

Charlie is still on a rollercoaster of a ride and we experience many highs and lows daily as a family especially with eating and ongoing hospital admissions. 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.

NEC UK: "NEC is devastating in the both short and long term for families of mixed outcomes NEC is scary, it’s very distressing to see a baby go through, NEC has many uncertainties and as families there are questions that can’t always be answered. It’s not uncommon for families affected by NEC to experience repeated setbacks. Psychologically the impact of NEC cannot be measured"

#May17thnecawarenessday #preventNEC #weargreenorblue #becausetinybowelsmatter #Theradfordfamilysurvivingnecrotizingenterocolitis #Charlietwintwo #warrior #prince #fighter #RadfordRebel #preventNEC #NECday #ThisIsNEC


Blood Donation

We are incredibly thankful to all of you who donate blood and plasma, Charlie over has received multiple transplants over his 3 years of life I’ve lost count. Please could you consider donating blood. 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.


Organ Donation

Unfortunately, due to the nature of Charlie's condition we can never rule out that one day he may 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.


My Mental Health and learning Its ok to not be ok!

All though I may appear to cope and have my s**t together some days it’s been far from it. Only this past year have I truly come to terms with the day to day Stress, anxiety and depression i face caring for twins one with a disability, caring for a disabled partner as well as dealing with the dreadful news my Father has Cancer. On top of all of this i have to keep this house running and make sure im on top of all the chores.. For a very long time i told myself i was coping with it all however i was far from it..


The hardest thing I’ve done is admit to myself that I’m suffering Stress, Anxiety and feeling incredibly depressed Everyday felt like Groundhog Day!! Then one morning i woke up i looked online for signs and symptoms of stress, anxiety and depression and completed an online test to score your thoughts and feelings. I scored highly therefore this encouraged me to speak with my partner Robert exactly how i feel, i spoke with my parents and a close friend who all supported me incredibly and advised me it was time i visited my G.P for support.


"My main fear was what other people would think of me and what if they judged me for getting support & medication"


Speaking with my G.P although I initially didn’t want to take medication the doctor thought I would be best considering all that I’ve been through. He also encouraged me to speak with others and explore keeping a journal of my feelings, worries and a strategy for helping my decision making more clearly. After our discussion I decided to start our family blog i had already been keeping an a journal as this helped me to remember any concerns regarding Charlie's health etc.

For a very long time I've been angry and would ask 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.

Please speak with your family or G.P if you too feel you may be experiencing Stress, Anxiety or Depression your health is also important and your family need you x


I share our Journey on Facebook and though our Website in the hope that you will read our story and share the effects of this terrible disease Necrotizing Enterocolitis. Please take a moment to consider donating to The NEC UK Charity www.necuk.org.uk A charity that is close to our heart💚💙


Information and resources:


https://www.necuk.org.uk

http://www.shortbowelsurvivor.co.uk

https://www.blood.co.uk

https://www.organdonation.nhs.uk


#May17thnecawarenessday #preventNEC #weargreenorblue #becausetinybowelsmatter #Theradfordfamilysurvivingnecrotizingenterocolitis #Charlietwintwo #warrior #prince #fighter #RadfordRebel #preventNEC #NECday #ThisIsNEC


Thank you for taking the time to read our Journey

Sending you All our love & well wishes

💚💙The Radford Family Surviving Necrotizing Enterocolitis💚💙

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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.