Let's Raise Awareness Together...
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. The image to the left shows just how bad Charlie's Small bowel was affected...
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.
We could not believe that this is more common in premature babies and babies with underlying health conditions relating to 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 roughly 25cm 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.
Charlie also has a rare condition call Situs Ambiguus (Heterotaxy of the Abdominal Organs with Polysplenia) This 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 his multiple spleens 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"
Please take a moment to consider donating to The NEC UK Charity www.necuk.org.uk
Let's all raise awareness of NEC together
We share our Journey on Facebook and though our family Website in the hope that you will read our story and share the effects of this terrible disease Necrotizing Enterocolitis.
Visit https://www.necuk.org.uk for more Information and resources
Thank you for taking the time to read our Journey
we ask if you could please share & like our facebook page to raise awareness of this devastating disease.
💚💙The Radford Family Surviving Necrotizing Enterocolitis💚💙