The bravest little girl in the WORLD

Children are so resiliant when it comes to health and surgery, as a parent it can be one of the most agonizing experiences, in family life. Attempting to juggle family life, routine, hospital visiting times, travelling and the added emotional strain, caring for a sick child, liaising with specialists, nurses, surgeons and, life threatening surgery….

Yet children teach us through their courage and bravery. They smile when they’re in such pain, and they sigh when they want to get up and move about…. They show us how fragile life can be, and also, how couragous they are, when facing a scary and sometimes, traumatising procedure. Heart surgery is a huge major surgery!

Congenital Heart Disability runs in my family, both grandmothers were both affected with heart diseases, so when this amazing little angel arrived in our family, we were truly grateful. I’m exceptionally proud to share my niece, our special angel, with you all.

Her mother was absolutely huge in her pregnancy, the doctors told her that Eleana wasnt going to make it and she should consider termination. (They were quite persistant to be fair, as they never be,ieved she would grow past 20 weeks!

Well, my sister insisted that was no option – she insisted her baby gets a fair chance at life and it was not her choice to determine if Ellie lives until its her time to go! It was all in Gods hands.

My sis spent her whole pregnancy, never knowing if she was going to hold a baby in her arms, or if we were all going to be planning another baby funeral. The situation was ever more intense because, well between me and my sis, we did pretty much faced everything type of cpregnancy omplication between us, emergency surgery, heamorraghing, premature special care, horrific miscarriages….

Anyway, my sis was just as scared as she was excited during pregnancy. Afraid to love her too much in utero, just incase Ellie didnt make it to full term, but once labour began… we all waited, with bated breathe… for what would happen next?

Eleana arrived six weeks prematurely with a missing valve, a hole between two chambers of her heart and dilated pulmonary arteries. Doctors and surgeons didn’t believe little Eleana would make it. She was the smallest baby to undergo open heart surgery in Britain. I’m not sure if this is a world record, but in UK, she holds the title!

Born on 13th January 2011 weighing 3lb 11oz, Eleana was born without a pulmonary valve and enlarged heart pulmonary arteries. A condition called DeGeorge Syndrome was diagnosed during pregnancy, and velo cardial facial syndrome. Eleana was mostly affected by her enlarged heart and her breathing.

She was dependent on a tracheostomy, because the valve in her lung was weak and kept closing, because her enlarged heart, squashed the valve that opened and closed for respiration, which kept causing her to go into cardiac arrest, several cardiac arrests! She stopped breathing twice during her first two years of life, once she was clinically dead for 25 minutes, an experience her mother has vivid memories of and miraculuously, no further problems or any sign of brain damage! Her specialists are astounded at her recovery and strength.

She attends a mainstream school, which her mother faught hard to get, (when you have a disabled child, you spend your whole life, fighting for them.) She dances, walks, jumps, runs and does pretty much the same as any other child, except, she isn’t up to speed with her speech! (Medically, she wasnt supposed to grow full term, with many babies born still, or misscarry)

This brave young warrior has been through more trauma than many of us care to consider. She has died twice, once for 25 minutes and another for 15, amazingly, with no further damage. And here she is, still smiling and finally, trying to talk.

Her story is a miracle, and one that demonstrates courage and a relentless fighting spirit, her strength and determination to conquer the physical disability she was born with is a testament to her survival, against all the odds.

Eleana is 7 in two weeks. She has experienced seven major heart surgeries, four respiratory, and last september 2017, the tracheostomy was finally removed allowing her to finally breathe on her own.

Today Eleana is a thriving mobile child, she attends mainstream school and is intergrating into her social circle beautifully. Her journey has been fraught with emergency admissions where her parents were never sure if she was going to come home! She was dependent on a ventilator up until september, so this was her first christmas since the removal of the tracheostomy, she is now able to use her voice, although she still has quite a long journey ahead of her, she is a shining example of a warrior child, that has beaten all the odds – to survive.

When she was five she was asked if she knew God… She nodded… then probed a little more, ‘did he say anything?’ she nodded again, and used sign language to say – ‘Go home’ she recited each persons name and indicated, go home – pointing at mum, dad, brothers and sister.

A true hero, warrior, survivor and, thriver, she’s nearly seven! I’m sure you would agree that her astounding strength, courage and resiliance has amazed everyone whose life she has touched.

Aren’t children just amazing!

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