WHILE the rest of us will no doubt be looking forward to unwrapping presents under the tree and enjoying time with friends and family, for one toddler, this Christmas will be more special than anyone could imagine.
Born on Christmas Eve 2019 with a hole in her heart, baby Ella’s life has hung in the balance for endless months.
She has spent both her first two birthdays AND her first two Christmases critically ill in hospital.
But, finally home for Christmas this year, mum Hayley Staniforth, 36, and dad Lenny Hulme, 33, are spoiling their miracle daughter and making up for lost time.
Nursery practitioner Hayley, from Ravenstone in Leicestershire, tells Ella’s story:
Having been advised to abort our daughter before the birth, then told on countless occasions to say our final goodbyes to her, it really isn’t an understatement to say Ella’s our little miracle.
We first knew something wasn’t right at the 20-week scan in August 2019 – the doctors couldn’t see her spine or heart because of the position she seemed to be in, then a scan at 26 weeks couldn’t see a valve in her heart.
Referred to a specialist, we were given the bombshell she had a large hole in the bottom of her heart.
My partner Lenny and I were advised to abort her – with a congenital heart defect like hers, she would likely have Down’s syndrome or some other disability.
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But Lenny and I knew straight away we couldn’t give up on her.
I’ve worked with adults with special needs, and whatever happened, we knew we could give her a loving home.
The medics at Leicester Royal Infirmary fully supported our decision, and after a scan at the start of December, said they wanted to induce me a few days early, on December 21.
Nobody knew if she’d come out breathing, or what would happen, so those days leading up to me going into hospital were absolutely terrifying.
I ended up having a two-and-a-half-day labour, and on 4.29am on December 24, Ella was born – I was in so much pain for so long, endless doctors and nurses coming in and out of the room to check on me.
Lenny and my mum Julie were by my side throughout, praying we’d make it.
Ella was born a healthy 6lbs 1oz, and breathing, but she was so purple and shrivelled she really didn’t look like a baby – but we knew the full picture wouldn’t emerge until she had scans on her heart.
Whisked away before any of us could hold her, 12 hours later she was blue-lighted to Glenfield Hospital for specialist care, put in an incubator and given prostaglandin to keep her heart ducts open.
Lenny and I first saw her at 7 hours old, but knew every hour counted – given accommodation next to the hospital by children’s charity Heart Link, we tag-teamed sitting by her side, praying for a miracle.
We both got to hold her for the first time on Christmas Day, which was the best present we could have ever hoped for, but also far from the ideal scenario.
We’d bought her a ‘My First Christmas Outfit’ which was too big for her, so we wrapped her in a pink blanket with a little teddy and took some photos to show friends and family.
We knew this might be the last Christmas we’d ever have with her, so wanted to make it special.
On day three she finally had an MRI scan which confirmed she had pulmonary atresia, causing the huge hole in the bottom of her heart as well as a something called MAPCAs – the blood vessels transferring blood from the heart to her lungs being underdeveloped.
While the long-term prognosis was very uncertain, Ella seemed to be stable – we were transferred to Birmingham Children’s Hospital for monitoring, and then discharged home a couple of weeks later.
Four times she was so critically ill we were told to prepare ourselves for the worst and to say our final goodbyes
While it was amazing walking through our front door with her, it was also very scary, knowing she could go into cardiac arrest at any time.
With regular scans and checks at both Glenfield and Birmingham, the start of the pandemic meant we had to isolate early, and then on August 6 Ella went in for her first surgery to fix her MAPCAs and put an artificial valve into her heart.
Again, we were told the outcome was far from guaranteed and lots could go wrong.
Sadly that surgery didn’t seem to work, and not long after we were told her heart wasn’t working – after months at home with Ella, it was a massive step backwards.
Lenny and I ended up spending the next 150 days in PICU with Ella, with almost daily setbacks including sepsis, rhinovirus, a perforated bowel and more.
Four times she was so critically ill we were told to prepare ourselves for the worst and to say our final goodbyes.
But somehow Ella did pull through – perhaps the hardest part was all the Covid regulations, meaning Lenny couldn’t be with us in hospital, and dealing with that rollercoaster on my own was simply horrific.
In the run up to her first birthday and Christmas, on Christmas Eve 2020 we got the news that she’d tested positive for coronavirus and she was put into isolation.
Her health was still so fragile, we knew this was the end.
The hospital made an exception for us on Christmas Day and let us both be with our precious daughter, the tears streaming down my cheeks – she didn’t have any presents to open because of Covid regulations, we were stuck in hospital yet again over Christmas thinking we’d leave without her.
Four days later she was tested again, and it turned out the original Covid result had been a false positive – the sense of relief was crushing.
Finally, on January 4 we were discharged to go home.
GOOD END TO TOUGH YEAR
Since then we’ve been in and out of hospital dealing with infections and other scares, but now, in the run-up to our first ever Christmas at home together, she seems to be in good health.
Ella’s almost walking now, she constantly babbles, and her smile simply lights up the room.
Needless to say, we started our Christmas – and birthday – preparations far too early!
This is going to be a massive catch-up for us.
We’ve got our tree up with a light-up reindeer and snowman next to it, and tinsel literally everywhere.
Hilariously, Ella’s frightened of the tree and cries when she’s near it.
We’ve splashed out on a Mini Mouse train set she can sit on, a wooden pushchair, a baby Anabel, a Tangled Doll – the list goes on and on and on.
And we’ve bought all of us a pair of special festive pyjamas to wear on Christmas Day while we’re opening all the presents from Santa.
We know that in the future Ella will need lots more surgeries to keep her alive with the hole in her heart as she grows – if they can close it, she might live a full and happy life to 70, if not she might only be with us until she’s 20.
But right now, every single day at home with our little miracle is the best present we could ever hope for.
To find out more about Heart Link Children’s Charity at www.heartlink-glenfield.org.uk
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