Giraffes, music therapy, her TV (she really loves Strictly Come Dancing, Death in Paradise, Doctor Who and Once Upon a Time), going to the cinema (especially for Fairies, Disney or Superhero films), spending time in the garden, planting seeds like mummy, days out with the family, laughing at the dogs getting told off, swimming, art therapy, crafts (particularly if she can throw glitter everywhere) and music – her favourites; Gary Barlow whose voice she can pick out anywhere, Take That (obvs), Adele, Olly Murs, Will Young and Coldplay. To be fair, so far she has only seen Will Young in Concert and attended Gary’s one-man show.
Elke is known as Elke 'B' as my intention had always been to call her Berengaria. The week before going into labour Matt and I saw the Film, 'A Shot in the Dark' starring Elke Summer and we then started discussing whether, if we really were having a girl perhaps Berengaria Elke was a better fit into the lilt of our family names (we called our son, Galahad) - better than Elke Berengaria?
At the time Wiz was asked what we intended to call our baby girl his response was, "Elke Berengaria", and of course, I was still unconscious and unable to correct him!
Through all the chaos of the next few hours, days and weeks Elke Berengaria became 'Elke B' or 'Elke BB' and we even started making up songs including her name - perhaps I can sing these to you on a video sometime soon! Let’s ignore that, Berengaria does NOT appear anywhere on her birth certificate. Twenty-one years later we still call her Elke B!
Elke used to love staying at Demelza’s hospice respite centre in Sittingbourne Kent which we referred to as her 'spa retreat'. She was happiest when I was sent home and didn’t get to witness the mischief she would get up to.
Our hope is that she can soon start using their Hill Farm respite unit and continue to access the fabulous facilities at Demelza until she is twenty-five. At present, there are no other respite facilities for Elke or any other Young People who are medically complex or fragile in Kent.
During the final stages of labour, Elke was starved of oxygen which caused irreparable damage to her brain. These events are known as Hypoxic events and her condition is known as Hypoxic Ischemic Encephalopathy (HIE). Other examples of when hypoxic events are known to occur could be children experiencing sudden or swift near drownings or falling into ice-cold water.
The effect of reducing the oxygen to the brain at this critical time means that the brain initially shuts down those neural pathways of the less important skills. In Elke’s case, it was the fine motor skills such as mouth movements, finger and toe movements and the sight to her eyes. As the time of the hypoxic event increases the number of neural pathways that are shut down increases leaving just the essential functions such as the heart, breathing and digestion - if possible! Usually, any hypoxic event lasting more than ten minutes would result in death. Elke’s event was assessed to have lasted seventeen minutes during which time she was still attached to me via the umbilical cord.
There are several videos that I recorded on the 4th of April 2020 which we will add here along with transcripts which give you an insight into the effects this event has had on Elke and her life, and also some of the impact it has had on myself and the rest of the family.
The 4th of April is HIE Awareness Day launched by the charity PEEPS which offers support for parents whose children have suffered from HIE.
