Scarlett’s second chance
On 20th October 2017 our beautiful daughter Scarlett was born at the Norfolk and Norwich university hospital.
The pregnancy and all the scans told us Scarlett was healthy and she was due on the 19th December 2017.
On the 20th October I started getting contractions around 3am and we knew something was not right, when we arrived at the hospital I was told Scarlett’s heart rate was dangerously low and was taken for an emergency c-section.
As soon as Scarlett was delivered we knew something was wrong she wasn’t crying and doctors were rushing in and out of the room, after 20 anxious minutes we heard a cry and Scarlett was brang to us for a quick glimpse before being rushed to the neonatal intensive care unit.
It felt like an eternity while still in theatre and recovery not knowing what had happened or what was wrong with our beautiful girl, finally I was able to go and see my precious baby girl but nothing prepared me for what I was about to see!
Scarlett was so tiny only 3lb 8oz and doctors could not explain why Scarlett could not breathe for herself and had to be ventilated.
On 25th October Scarlett was taken to theatre by the ENT specialist to try and find out why Scarlett could not breathe and it soon became apparent that she had choanal atresia ( no nasal passages) but the surgeon was able to open her nasal passages enough to insert small tubes that Scarlett could be fed through.
Over the coming weeks more problems became apparent, Scarlett’s head was growing very rapidly and she would stop breathing for no apparent reason even whilst ventilated, numerous tests were done in these weeks and we found out Scarlett had hydrocephalus ( a large blood clot in her brain meaning her brain could not drain excess fluid ) 2 holes in her heart, colobomas in both her eyes ( holes in the structure of the eye ) , complete deafness in her left ear and partial hearing loss in her right all leading to the diagnosis of CHARGE SYNDROME.
On 4th November Scarlett was transferred to addenbrookes hospital in Cambridge and had a small device put in her head to drain excess fluid called a reservoir but despite this her head continued to grow and the more fluid doctors took Scarlett would have seizures.
After numerous surgeries to correct Scarlett’s airway on January 10th 2018 doctors had no choice but to insert a shunt into Scarlett’s head to manage the excess fluid and after contracting septicaemia and being told they could not save our beautiful girl Scarlett pulled through and it’s still working to this day.
Over the coming month Scarlett’s breathing improved drastically no longer requiring the ventilator but with all her conditions and the fact she still was very small on February 11th 2018 Scarlett was discharged and finally came home with us with support of community nurses and specialist equipment!
The next 12 weeks would be the most difficult but precious moments we would have with Scarlett being a family again with her 3 siblings things almost seemed to be going to well....
On 13th may 2018 while at home Scarlett suddenly stopped breathing, it was all so sudden I called the ambulance whilst dad tried to resuscitate my lifeless child, we managed to bring her around and when the ambulance arrived she was rushed back to the Norfolk and Norwich university hospital where we found out her left lung had suddenly collapsed.
The hospital told us Scarlett was now to old to be treated in Norwich and she was transferred to st Mary’s hospital in London.
scarlett deteriorated rapidly with pneumonia spending 2 weeks in London being resuscitated and pumped full of antibiotics putting strain on her heart and causing her to swell.
After 2 long weeks by some miracle Scarlett suddenly improved very quickly and was well enough to be transferred back to Norwich.
We headed home to meet her on the other side but hours went by and Scarlett did not arrive in Norwich when we received the worst phone call of our lives...
Upon being transferred back to Norwich Scarlett suffered a cardiac arrest in the back of the ambulance but thankfully the amazing nurse with her managed to stabilise her and get her to the lister hospital in Stevenage as it was the closest hospital.
we rushed to the hospital and after all Scarlett had been through the last thing we expected to see was our beautiful girl laying there smiling at us she’s such an amazing little fighter we could not believe it.
Later that night we were transferred back to addenbrookes hospital in Cambridge where Scarlett suffered a second cardiac arrest and was re ventilated.
It was then that doctors looked deeper into Scarlett’s brain and discovered Scarlett’s brain is severely damaged beyond repair and we was asked to make a decision no parent should have to make to either continue treatment or discontinue.
After weeks of careful thoughts, meetings and opinions we all agreed that Scarlett deserves a second chance at life!
Scarlett remains in addenbrookes hospital to this day and is planned to come home 10th December 2018.
Scarlett now has a tracheotomy and is doing well she will remain on the ventilator for the foreseeable and since making the decision Scarlett has surpassed all expectations given by doctors and is truely the happiest baby you would ever meet!
WHY WE HAVE CREATED THIS CAMPAIGN
Scarlett is due to come home 10/12/2018 leaving us very limited time and funds.
Since Scarlett was transferred to addenbrookes our whole family has been separated, dad lives and works in Norwich i stay with Scarlett in Cambridge and our 3 children are living with there amazing auntie amber.
This alone and due to dad missing so much time off work has left us struggling to just get by even having to sleep in our car in London just to be with Scarlett.
We now have to move home on top of this as our current home is unsuitable for Scarlett’s needs.
As well as this there’s a mountain of specialist equipment and adaptions needed for Scarlett to come home of which we simply cannot afford and do not know if we can get any funding for.
Scarlett has severe damage to her brain we do not know if she will ever walk or talk ect
She cannot breathe for herself as her lungs are simply too weak and will come home fully ventilated with a 24/7 nursing team.
We would love to be able to create Scarlett a special sensory room for when she comes home that will be safe, warm and most of all help her develop.
We hope that in time Scarlett will improve and beat the odds of which she has done so many times.
Thankyou for reading Scarlett’s story and any shares or donations are massively appreciated.