Before Eden Sue Jones’ birth, her parents were warned that she had a “very large growth and may not survive”.
She was diagnosed with a cystic hygroma – a collection of fluid-filled sacs, or cysts, that result from a malformation in the lymphatic system – at 20 weeks' gestation.
Occurring in about one per cent of children, they can develop anywhere in the body but are commonly found in the neck and armpits.
In Eden’s case, she had large cysts compressing her airway, which could have led to potentially fatal breathing problems at birth.
Blogging about raising a child with cystic hygroma and how she copes, the girl’s mum, Chelsea Jones, explained that Eden was delivered at 39 weeks.
Her daughter was born “through a C-Section in a room full of doctors, Paediatric ear, nose and throat surgeons and NICU [Neonatal Intensive Care Unit] nurses”.
Chelsea said her husband, Taylor, was also nervous as while she was pregnant, “I knew I could keep my baby safe breathing inside me. Soon doctors would be taking her away from me, ready to try and save her life.”
Given that they'd been warned their daughter may not survive, the couple, from South Wales, were amazed to hear Eden’s “beautiful loud cries” upon being delivered on August 9 in 2016.
Chelsea recalled in her "Little piece of Eden" blog that 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.”
Eden was immediately put in a baby incubator, with “tubes and wires”.
Seven weeks later, she was admitted into Noah’s Ark Children’s Hospital in Cardiff, where Chelsea and Taylor learned how to care for their daughter.
Chelsea wrote: “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. We never expected it, but she did it.
“Here we are, two years on, countless hospital visits and nine treatments later, with our perfect happy little girl.”
So far, Eden has undergone a total eight sclerotherapy treatments – where a doctor injects medicine into the cysts to help it shrink – along with a laser and cyst removal on her tongue, to help reduce the size of the mass in both her neck and tongue.
Next month the brave girl will have a tongue reduction procedure carried out before “eventually undergoing serious, surgical removal for the remainder of the malformation,” Chelsea said.
Praising her daughter’s determination, the proud mum wrote: “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. We still have a long journey ahead of us… but we have come so far.”
Addressing her daughter in a poignant blog, which was also created to raise awareness of the rare condition, she tells Eden that as her mum, she hopes the girl will continue to “inspire those around you.
“I wish for you to know how unbelievably beautiful you are, and that beauty has nothing to do with the way you look or your size.
“Believe in miracles; for you are one yourself.”
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