Today is 1st November The start of Prematurity Awareness Month
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).
As a Trustee member for NEC UK Charity I hope to share with you my son Charlie's journey to help raise awareness of NEC and this devastating disease that affects so many babies world wide.
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 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 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 15hrs 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, 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, friends and NEC UK support groups have helped us tremendously. We have also met some amazing families along Charlie's journey while in hospital and online and we thank you to for all of your ongoing support, advice and encouragement.
Since talking openly about Charlie and my family 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 Father 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.
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.
Thank you for taking the time to read Charlie's Journey
Sending love and well wishes to you all
x Claire Radford x