WARNING - CONTAINS DISTRESSING RETELLING OF ACTUAL EVENTS REGARDING NEWBORN ILLNESSES
Rohan's Story
Hi, I'm Rohan Singh Saini.
I was born on the 25th December 2019, yes I'm a Christmas Baby!
My mummy was told that I had a condition whilst I was still in her tummy. I was born unable to swallow which lead to many complications when I was born. The actual name for my condition is TOF Long Gap Astresia.
​
​
​
​
I was born at 37 weeks and 4 days and, though I'm classed as a full term baby I still, needed very special care provided by the amazing nurses and doctors who work for the NICU Team.
NICU Medical Teams look after:
Micropreemies
Premature Babies
Term Babies who require special care (Like Me).
What they did for me
The specialist teams both helped me to breathe and keep my throat clear with a sectioning tool. They did this EVERY 15 MINUTES from the 25th December to 3rd February 2020! This is when I had my Long gap repair surgery. They stretched my oesophagus to the bottom of my throat.
Shortly after this surgery I had aspirated and had to be put on a ventilation machine. This helped me breathe. The chest drain from first surgery had moved and had caused a tear.
I was taken for an emergency surgery. The team told my mummy and daddy they were unsure I would make it...
​
...But I did.
​
They left me on a ventilation machine and co2 machine for two weeks. With all the medication I was given I was very swollen so I had to wait a few weeks to see if it was a successful surgery.
Though there was a small hole, that would heal by itself, it was successful and I was allowed to move on a big boy ward! This is where we got to see if I could drink properly on my own for the first time!
I was discharged on 17th March 2020 so that means I spent 83 days in the NICU and Special Care Baby Unit.
MY JOURNEY
Since my birth on Christmas day I have had the following:
26th December...1st Surgery...Gap Inspection
3rd February... 2nd Surgery....Long Gap Repair
10th February...3rd Surgery...Emergency Surgery
30th March...NG Tube reinserted
26th May...Dilation Surgery
12th June...Emergency Dilation Surgery
13th July... Emergency Gastrostomy Tube Change
1st August...Emergency Enema Procedure
That's a lot for one little human to go through.
​
On top of all those surgeries and procedures, I have had various trips to AE to see my special friends who helped me from the day I was born.
I have also been given three Blood Transfusions since my birth. So that automatically means I cannot give any blood when I grow up. But my mummy has been donating blood and is booked again in November 2020 to do her 8th donation and I am her inspiration to continue donations.
This is my story. This is my journey. Please do support the NICU.
Thankyou
Rohan
Oxford neonatal trust
The Newborn Care Unit at the John Radcliffe Hospital looks after over 500 sick and premature babies a year across their three units - intensive care, high dependancy and special care.
​
Crucial, around-the-clock, life-saving research, training and care is carried out by a dedicated team of selfless doctors, nurses and medical staff.
​
​
SSNAP
SSNAP, support for the sick newborn and their parents, carry out essential work within Oxford's John Radcliffe NeoNatal Unit. They play a key role in championing the rights of sick and premie babies, all whilst providing vital support for the families involved. They purchase life-saving equiptment and provide around the clock monitoring for little ones placed within their care.