Along with Alba’s story

Hi everyone my name is Joanne, I would like to fundraise money for my beautiful granddaughter Alba our little miracle.

 

My daughter went into hospital on Boxing Day 2020 after she started to haemorrhage and had reduced movements this is when her pregnancy with Alba took a downhill spiral. She was told she had placenta previa and that it would be dangerous if she went into labour that she could bleed to death. She was monitored closely, after spending 3 weeks on bed rest at the Liverpool women’s hospital Olivia’s waters broke at 26weeks. Luckily she managed to keep Alba in until she started feeling really poorly, she started to have reduced movements and her body was telling her something wasn’t right. She was monitored but the machines also weren’t detecting any movements but the doctors wouldn’t listen and left her for 3 days with no movements. Sunday the 7th February 2021 at 21.00 our little miracle was born via emergency c section weighing a tiny 2lb 5oz.

 

Alba was resuscitated twice at birth and was shortly put onto a ventilator to help her breathe, Alba the little fighter she is turned a corner and quickly came off the ventilator within 4 days and put on cpap. From then Alba’s nicu journey was pretty smooth and they went home just before her due date in April to start their new chapter. They was told Alba was a happy and healthy baby they couldn’t wait to see Alba grow and meet her milestones.

 

Unfortunately that was not the case, after 15 admissions to 3 different hospital with a screaming baby they was sent home every time and told there was nothing up with her! For months they struggled with getting told mixed things it was reflux, she was a spoilt baby and she had a milk allergy. But Olivia and James knew there baby wasn’t right and she also didn’t do anything she was way behind on all her milestones.

 

Olivia and James demanded a MRI scan to see what was up with the little girl after all she was supposed to be healthy so why was she crying all the time? 28th September 2021 they got the dreaded phone call that Alba had suffered from a bleed on her brain leaving brain damage but was told it’s ok as it only affects her eyesight! They later discovered that when Alba had a scan in NICU she had water on her brain and they weren’t informed and no follow up was made, this is what turned into a bleed. The hospital have recently said Alba was unfortunate they did not inform the parents or do any follow up scans which is the procedure! But even if they did it wouldn’t of made any different she would of still ended up with brain damage.

 

They finally had an appointment in Alderhey they didn’t know what for as it just stated general paeds, they walked in to a room full of professionals unprepared for the most devastating news they had ever received.

 

18th of October 2021 there whole world was turned up side down, they were told there “healthy baby” would never walk or talk and they don’t know what vision she has got as she doesn’t respond or fix and follow. Alba was diagnosed with HIE(starved of oxygen) Bilateral Dyskinetic Cerebral palsy, cortical vision impairment, unsafe swallow so Alba is fully NG fed through a pump feed and is awaiting surgery for gastrostomy tube , Laryngomalacia, gastroenterology problems, severe reflux and she also needs suctioning for secretions and the list goes on! She needs 24/7 care and all different kinds of medicines around the clock and therapy from physio, occupational and speech and language.

 

Alba has been and inpatient on the neuro ward 4B at Alderhey since October and is still there now 3 months later. She’s been suffering from dystonic spasms which is

parts of your body twisting into unusual positions – such as your neck being twisted to the side or your feet turning inwards. She got a number of complex medical conditions but is under and amazing team at Alderhey including neurology, gastroenterology, general paediatrics, ENT, ophthalmology and also her community nurses and matrons who keep her safe whilst she’s at home.

 

As a family we have been looking at what we can do for Alba, so she can live her life to the fullest potential and hopefully do some of the normal things we take for granted! Alba is nearly one and she still can’t lift her own head, She’s like a newborn baby. We are looking into different therapy’s, treatments and surgery’s that will give Alba the best chance in life! Olivia and James are in contact with a hospital in China about stem cell therapy as it’s not available in the UK. It cost around £20’000 that is without accommodation and transport to Panama city 

 

We have the amazing NHS to help with wheelchairs, and equipment but that alone won’t help Alba she needs all the help she can get. She is the most beautiful little girl and deserves a chance more than anyone such a little fighter what she has over come these past 11months! Anyone who meets her just falls in love with her

 

We want to thank you all for taking the time to read all about Alba’s GoFundMe and for all the donations you are able to raise or give. If you would like to make a donation directly to us, just let us know and I can add this to the total as an offline donation.

 

Follow Alba’s journey on Instagram-

@alongwithalba_x