A ‘miracle’ baby whose parents were told that she wouldn’t live past a DAY has defied all odds to become a happy little girl.
Before she was born, Eden Sue Jones’ parents Taylor and Chelsea Jones, from South Wales, were told there was a chance their daughter might not survive.
That’s because their unborn baby had a cystic hygroma: a fluid-filled sac that results from a blockage in the lymphatic system, Wales Online reports.
Doctors feared that large cysts compressing her airways could potentially lead to fatal breathing problems at birth.
Taylor and Chelsea were given the devastating news that Eden might not make it past her first day.
But at 12.01pm on August 9, 2016, miracle baby Eden defied all the odds and was delivered by C-section in a room full of doctors, paediatric ENT surgeons and NICU nurses.
She was born with a lymphatic malformation in the form of a mass on her neck.
Two years, countless hospital visits and nine treatments later, Eden has kept surprising doctors and defying the odds to become a perfect, happy and beautiful little girl.
She’s also become a big sister to three-month-old Auggie Raye.
In a bid to kick the stigma of her disability, Eden’s mother Chelsea has opened up about their lives and has started writing a blog about their journey.
Providing an intimate, emotional and personal glance at their lives, Chelsea opens up about everything: from the dark, scary beginnings of her pregnancy, to disgusting comments from trolls the family have encountered online and finally, the beautiful young girl Eden has become.
Here’s a look at just one of Chelsea’s inspirational blog posts, which was originally published on the Love What Matters website.
"The night before she came, we were up late," Chelsea writes.
"I was so anxious. I cried so many times that night. I was so scared of the unknown. How could I be excited when I didn’t know what was going to happen to our baby?
"I felt a whirlwind of emotions, I was SO excited but more fearful.
"Will she survive? Will she be breathing? Will I get to see her before they take her? There were so many things going through my mind it was impossible for me to go back to sleep.
"So, I got out of bed and got ready for one of the biggest and most important days of my life."
Too "shaky and nervous" to drive themselves to the hospital, Chelsea and Taylor were driven by family members and Chelsea was hooked up to a number of monitors to observe the baby.
"It was strange, sitting there just the two of us, waiting to be rolled back to the operating room.
"We managed a few nervous smiles and laughs. We kept talking and wishing that we’d soon be a family, and that our baby girl would be OK.
"I wasn’t nervous at this point. I tried to switch off from what was happening – otherwise, I would have gone into complete frantic mode.
"I don’t think it had quite hit me yet."
But it wasn’t long before the true reality of the situation started to set in.
"All the fear and nerves that I carried right through my pregnancy hit me all at once," Chelsea writes.
"Taylor tried to help me stay calm, but he was just as nervous.
"This was it – there was no turning back, and for a second, I wished I could have stayed in that moment forever. Where I knew I could keep my baby safe breathing inside me.
"I had carried her for the past nine months and soon doctors would be taking her away from me, ready to try and save her life."
Around 20 doctors and nurses were involved in the delivery of Eden, so much that they filled the whole corridor outside the operating room.
"It was such a tiny room – I began to feel claustrophobic.
"I tried my best to not look at how many people were actually in the room as it made the situation a million times scarier.
"I was rolled onto the cold operating table to begin [the birth].
"Was this really happening?"
Chelsea was given spinal pain killers and doctors immediately began the C-section surgery.
"Taylor kept reassuring me that everything was going fine and suddenly – within 15 minutes of going into the operating room – I heard the most beautiful loud cries!"
"I can’t even tell you what I felt at this moment in time," Chelsea said.
"Everyone was in complete shock.
"Our baby was here and she was crying – just like some miracle.
"No one was expecting it and even some nurses began to cry with us.
"I was in complete disbelief. It all felt so surreal.
"I have never felt a flood of joy like I did that moment we heard our daughter cry.
"It was something we were told was unlikely to happen – even though I spent nine months praying it would."
Eden was taken immediately for medical checks, where doctors made sure she was healthy and her airways were clear.
She was then brought briefly back to Chelsea, before being whisked away once more to the Neonatal Intensive Care Unit.
"Tears of joy were streaming down our faces and Taylor stroked my hair and asked if I was okay.
"I only had a quick glimpse of Eden as they had to take her down to the NICU.
"I wanted her to be warm and safe more than I wanted to hold her right away.
"I was eventually wheeled out of the OR and brought to the recovery ward."
It wasn’t long before Chelsea’s anaesthetic started to wear off, and as the physical pain increased, so did Chelsea’s longing to see her newborn baby.
"I looked at all the other mothers with their babies and I felt helpless," she writes in her blog.
"My baby was alone with strangers and I no longer had control of anything.
"‘When can I see my baby?’ I asked the nurse who was taking my vitals."
Around six hours after giving birth, Chelsea was finally allowed to meet her daughter, and was taken to the NICU by wheelchair.
"I was finally able to gaze at our baby through a plastic baby incubator, and although there were wires all over her beautiful new skin and into her tiny little nose, they never once stole who she was.
"She was beautiful even with all those tubes and wires, and I just couldn’t believe she was mine.
"I stroked her head, staring into her tiny incubator and told her how much I loved her.
"She was our miracle baby.
"They finally lifted her out of her incubator and I got to hold her.
"I instantly felt whole again.
"She completed us.
"I felt a love that I never knew was possible. I got to hold her for nearly an hour before I had to leave her for the night to get my rest."
After such a traumatic pregnancy, Chelsea and Taylor were warned to prepare for the worst.
But after just two days in intensive care, little fighter Eden was moved to the ward with Chelsea before the two of them were allowed home: which meant Chelsea and her baby spent the same amount of time in hospital as a normal C-section patient.
The weeks that followed were long and slow, and at seven weeks old Eden was admitted into Noah’s Ark Children’s Hospital, where she spent nearly a month of her young life.
"We did our very best to get her home," Chelsea said.
"We fought medical teams and proved our worth. We learned how to care for our daughter beyond the requirements of any parent.
"We were medically trained. We knew more than some doctors did about her condition.
"All we knew were hospital walls, MRI scans, and car journeys. I cried every day.
"We couldn’t have gotten through that time without our family visiting every day.
"We loved her so much then, as we do now."
Finally, baby Eden was allowed home.
"She came home, and it was a miracle. She defied odds. She proved people wrong. She got rid of tubes and wires like they were nothing at all.
"We never expected it, but she DID IT."
"When we found out Eden had a lymphatic malformation, we were scared.
"We searched the Internet looking for any answers.
"We were told Eden wouldn’t be normal. We were told she would be malformed. We were told there was a chance she wouldn’t survive."
Chelsea said doctors were concerned about the size of the mass putting pressure on Eden’s airways.
"We were told surgery would be a normal course of life for years to come," she wrote.
"But, here we are two years on, countless hospital visits and nine treatments later – with our perfect happy little girl."
Eden is now two years old and so far has had a total of eight sclerotherapy treatments and a laser and cyst removal on her tongue to help reduce the size of the mass in both her neck and tongue.
She’s due to have a tongue reduction in January next year and will eventually undergo serious surgical removal for the remainder of the malformation.
"I don’t know how it’s possible, but all of this has just made me love this little girl so much more," Chelsea writes in her blog.
"She is such a fighter and my heart grows bigger with love for her every single day."
"We won’t let Eden’s illness define her and although we can’t do anything about it, we want to give her the best chance of beating it – physically and emotionally," Chelsea said.
"We still have a long journey ahead of us and no-one knows what challenges we may face along the way.
"We have had to learn to do things we should never have to as parents and we have built up courage that we didn’t know we had.
"But we have come so far."
"If I have learned one thing as a mother, it’s that motherhood is a journey filled with ups and downs.
"Just when I think I have it all figured out, the game changes, but I still never give up on hope.
"Above all, rather than trying to be the perfect mother, I try to be the best mother by always giving my best.”
This story was was originally published on the Love What Matters website.
You can follow Eden’s journey on Instagram and through Chelsea’s blog, A Little Piece of Eden.
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