Salaam all

@save_salahudeen on instagram

My name is Salahudeen. I am 2 years old now. I was born on April 2021 during Ramadhan. I came this far by a miracle, when I was born the midwives didn't think anything was wrong with me although I didn't poo within 24 hours which is quite serious.

my belly descended and veins buldged, rather than calling an ambulance the midwife decided to massage my belly and add to the agony. She also advised mum and dad to feed formula milk, the milk gushed down my throat, unable to poo or stop the milk, I kept vomiting.

Finally a ambulance was called, in hospital now the Dr reviewed and said to continue feeding. As my parents did so I eventually stopped responding because I was silently fighting for my life whilst everyone assumed I'm just sleeping as a newborn would. An evening Doctor comes in and gets a Xray done on me to find air all over my belly. My parents were told i may not make it.

Lights on, rushed away from parents, entered into theatre, surgeons and doctors all around me, put to sleep and I'm only a few hours old but they had to slice my belly open and fix a perforated bowel. The blow up caused feaces to travel all around my organs and increase bacterial infection.

I was in ICU, they managed to save me through Allah's will and gave me a stoma through my small intestine. My large intestine was stitched off inside and temporarily disabled. A mere few hours went by, my belly got big again and my belly was bright red.

Mum told the consultants and doctors who were amused and said absolutely nothing to worry about. Suddenly I'm rushed to theatre again, mum and dad had to sign papers to give consent that if I don't make it then hospital will not be reliable during this surgery.

Yeah so my mum was right and what had happened was the big bowel that was stitched off had completely become damaged from infection that stitches got loose and thus previous stool stuck in there started dropping out. So the surgeons cut the affected piece of the bowel and chucked it and this time sent me back with a fischula and a stoma.

I spent over 6 weeks in intensive care, mum and dad never left me for a day even whilst fasting. I fought and fought whilst on life machine, until wires and tubes slowly got removed and my parents finally got to see how I look without it all & got to meet my siblings for the first time after 7 weeks!

Mum spent countless nights dealing with stoma bag issues, sometimes it would leak and she would need to measure and cut a entire new one. Yes I no longer pooed from my anas, I had a bag attached to my belly where poo would be collected from my small intestine.

As the next few months of stoma struggles went by I ended up with 2 further surgeries to reverse my stoma and fischula and finally given the privilege to poop from my bottom. 7 months and I've had 4 major surgeries, 2 being emergency life or death but I was still carrying on.

8 months now and I suddenly can't breath, I'm gasping and struggling. Rushed to hospital and I was given oxygen. Mum told the nurse she believes I have pneumonia but the nurse laughed and thought mum was exaggerating. Later found that I was actually dying of pneumonia so treatment was quickly given, I was yet again wired up & had a long hospital stay.

Now I've been given a lung consultant who believed my case to be a simple reflux. Mum said and believed it wasn't reflux but hey, 'consultants always right'. Anyways the consultant said a CT scan will be done.

Fast forward now im 11 months my chest changed shape and dipped inwards. Mum and dad rushed to the hospital only to find out the CT scan promised was never booked. I clearly was no priority, but by now my chest had changed shape. a CT was finally done & we was told about suspected pneumothorax but they were wrong it wasnt that.

Now 1 years old i had another surgical procedure now were a camera was inserted into my lungs. Thus showed 4 big bacteria with other viruses, and a collapsed lung with hyperinflation too.

I was dying all over again but by Allah's grace the condition was acknowledged by now and I have been given lung physio to do to keep my lung healthy, for over one year now my parents have been doing lung physio on me & recently in Dec 2022 we were told that the current physio was not working & more of my lung had collapsed, they have now changed the physio to a BiPap machine to only trial if it helps.

My parents found out on my birthday that food is going into my windpipe which is also harmful, but for over 1 year the relevant team came and saw me and my parents were reassured that 'nothing' was wrong.

I also have blue episodes. I constantly go blue on my lips, get mottled skin and find it hard to breathe but nothing has still been discovered or diagnosed. my parents are constantly told to go a&e for me only to be monitored then sent home again.

The NHS system has constantly failed me. >when i was born the midwives delayed recognising that something wrong and my parents had to sign twice that they may lose me. >a doctor over dosed me in Dec 2022 for 3 days & gave me medicine of a child with cycstic fibrosis (which i do not have) >nurse gave me nebuliser which is not supposed to be oral fed. >nurse fought with my dad over toys and she got my dad ban from the hospital so he wasnt allowed to see me. >first consultant leading the case left it so long my lung collapsed, he didnt have any CT or Xray booked. > when i had pneumonia, my mum was sent back 3 times from a&e as i was wrongly diagnosed with bronchilitis. >my parents once left me in the care of nurses for 40 minutes and came and found me wrapped up around the oxygen wire and crying for help >consultant has told us he doesnt know what more needs to be done

My parents now need your help and support to get me private treatment, to help get a diagnosis before its too late. I have spent majority of my two years of life in the hospital but i want to be like every other two year old at home with my family.

Please help save me & keep me in your duas.

Lots of love, Salahudeen