WHY, the rest of us will certainly look forward to unpacking under the tree and enjoying time with friends and family, for a toddler this Christmas will be extra special anyone can imagine.
Born on Christmas Eve 2019 with a hole in his heart, baby Ella’s life hung in the air for months on end.
She’s gone through both her first birthdays AND her first two severe illness in the hospital.
But finally home for Christmas this year, mum Hayley Staniforth, 36, and dad Lenny Hulme, 33, are pampering their miracle daughter and making up for lost time.
Students at Hayley Kindergarten, from Ravenstone in Leicestershire, tell Ella’s story:
Having been advised to have an abortion before the birth of our daughter, then told on countless occasions to say our final goodbyes to her, it’s really no exaggeration to say that Ella is amazing. our little miracle.
We first knew something was wrong when the results of a 20-week scan in August 2019 – doctors couldn’t see her spine or heart because of the position she appeared to be in, after That scan at 26 weeks could not see the valve. in her heart.
Referred to a specialist, we received the bomb that she had a large hole in the bottom of her heart.
My partner Lenny and I were advised to have an abortion – with a congenital heart defect like hers, she could end up with Down syndrome or some other defect.
But Lenny and I knew right away that we couldn’t give her up.
I’ve worked with adults with special needs, and no matter what, we know we can give her a loving home.
The doctors at Leicester Royal Infirmary fully support our decision and after a scan in early December they said they wanted to induce me a few days early, on 21 December.
No one knew if she was going to die or what, so the days before I was hospitalized were absolutely terrifying.
I finished a two-and-a-half-day labor and at 4:29 a.m. on December 24, Ella was born – I was in great pain for a long time, doctors and nurses going in and out of the room endlessly to check check me.
Lenny and my mother Julie were by my side the whole time, praying that we would make it.
Ella was born healthy and breathing 6lbs 1oz, but she’s pale and shriveled and doesn’t look like a baby – but we know the full picture won’t come out until she gets a cut heart layer.
Bounced away before any of us could hold her, 12 hours later she was given the green light to go to Glenfield Hospital for specialist care, put in an incubator, and injected with prostaglandins to keep her alive. Her heart ducts are open.
Lenny and I saw her for the first time at 7 o’clock, but knew that the hours counted – given the Heart Link children’s charity next to the hospital, we sat next to her, praying. for a miracle.
We both got to hug her for the first time on Christmas Day, which was the best gift we could have expected, but also far from the ideal scenario.
We bought her a ‘My First Christmas Outfit’ that was too big for her, so we wrapped her in a pink blanket with a little teddy bear and took some pictures. photos to show friends and family.
We knew this could be the last Christmas we had with her, so wanted to make it special.
On day three, she finally had an MRI scan to confirm she had lung failure, which caused a large hole in the base of her heart as well as something called MAPCAs – the blood vessels that carry blood from the heart to her lungs. she is underdeveloped.
While the long-term prognosis was highly uncertain, Ella appeared to be stable – we were transferred to Birmingham Children’s Hospital for observation, and then discharged home a few weeks later.
Four times she was so sick that we were told to brace ourselves for the worst and say our final goodbyes.
While walking through our front door with her was amazing, it was also terrifying, knowing that she could go into cardiac arrest at any moment.
With regular scans and checks in both Glenfield and Birmingham, the start of the pandemic meant we had to quarantine early, and then on August 6 Ella had her first surgery to fix the MAPCA and Place an artificial valve in the heart.
Again, we are told that results are not guaranteed and that a lot can be wrong.
Sadly, the surgery didn’t seem to work, and it wasn’t long before we learned her heart wasn’t working – after months at home with Ella, it was a huge setback.
Lenny and I spent the next 150 days in the PICU with Ella, with near-daily setbacks including sepsis, hinovirus, intestinal perforation and more.
Four times she got so sick that we were told to brace ourselves for the worst and say our final goodbyes.
But somehow Ella made it through – perhaps the hardest part was all the Covid regulations, meaning Lenny couldn’t stay with us in the hospital, and dealing with the roller coaster on her own. that was terrible.
Before her first birthday and Christmas, on Christmas Eve 2020, we received word that she had tested positive for coronavirus and that she had been placed in quarantine.
Her health is still very fragile, we know this is the end.
The hospital made an exception for us on Christmas day and for both of us to be with our precious daughter, tears streaming down my cheeks – she didn’t have any presents. open because of Covid regulations, we were stuck in the hospital again for Christmas. thought we would leave without her.
Four days later, she was retested, and it turned out that the initial Covid result was a false positive – a crushing sense of relief.
Finally, on January 4th, we were discharged to go home.
GOOD END TO THE YEAR
Since then, we’ve been in and out of the hospital dealing with infections and other dreaded illnesses, but now, for the first time spending Christmas at home together, she seems to be doing fine.
Now Ella was almost walking around, she was constantly babbling, and her smile simply lit up the whole room.
Needless to say, we started our Christmas – and birthdays – preparations too soon!
This will be a big catch for us.
We’ve built our tree with a reindeer and glowing snowman beside it, and tinsel literally everywhere.
Interestingly, Ella is scared of the tree and cries when she is near it.
We’ve featured a Mini Mouse train set she can sit on, a wooden stroller, an Anabel baby, a Tangled Doll – the list goes on and on.
And we bought all of us a special festive nightwear to wear on Christmas Day while we were opening all the presents from Santa.
We know that in the future Ella will need even more surgeries to keep her alive with the hole in her heart when she grows up – if they can close it, she can live a full life. enough and happy to 70, otherwise she can only be with us until she is 20.
But for now, every day at home with our little miracle is the greatest gift we could ever hope for.
To learn more about Heart Link Children’s Charity at www.heartlink-glenfield.org.uk
https://www.the-sun.com/health/4342290/our-baby-girl-spent-her-first-two-birthdays-and-christmases-in-hospital/ I was asked to abort my daughter, then we almost lost her to Covid