Loraya’s Journey

Words from Loraya’s Mummy…

Never did I think I’d have to watch my perfect baby fight for life on numerous occasions, to be born with 3 major defects and still faces more surgery. To fight off pneumonia, sepsis, chest infections, collapsed lungs and survive a cardiac arrest! Countless blood transfusions and more medication than I can remember. 

‘Ive been thrown in to a club no one wants to be in, actually 3 clubs, “nicu mumma”, “heart mumma” and “born unable to swallow” 

My beautiful girl will have scars, scars that show how strong and amazing she is, truly a warrior! She has forte so hard and so much, more than most adults ever would! My beautiful girl oh how I wish I could swap places, as her heart slowly gets fixed mine is broken even more -keep up the fight my darling pumpkin, the bravest girl I know . I’m so so very proud and honoured to call you mine.

Update June 14th 2020

 Loraya’s current diagnosis is exomphalous (at birth) tof/oa, tetralogy of fallot, dorv, mapcas, tracheomalacia, bronchmalacia, Gord, Unsafe swallow so NG fed, CPAP dependant for 16 hours a day and oxygen for her 2-4hourly breaks off CPAP and development delay- she’s my amazing fighter.

Loraya also had  “full repair” on 21st November 2019 and it was such a hard long day, the surgery was a complicated one (typical Loraya) she had to go on bypass twice, had to have a VSD redo as there was more than first thought,  recovery was really hard she was very poorly on lots of support and nitric oxide for a long time and had to go back to theatre a week after the initial surgery (plus a couple times after)where they found she had MAPCAS, which she had coiled, she was in complete heart block for 2 weeks post surgery and was on milirone for a long time but thankfully avoided a pace maker! We spent Christmas in Southampton but I didn’t really care our baby was still here and all my children with me, what more could I possibly want? Loraya then came home finally after the best part of her nearly 16 months life in hospital on 20th January 2020, where apart from a couple of visits has been amazing! 

This is obviously a condensed version of events she really has been through a lot in her little life but she is the happiest little girl I’ve ever met with the most infectious smile and laugh.

Download our awareness song “I AM THE SONG’ to support Heart Heroes like Loraya…click the picture below.