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Nicola and baby Elodie's experience of HIE brain injury

Élodie has just turned three. According to her mum, Élodie is in many ways a typical toddler, chatty, happy and a real people person. 

ElodieÉlodie has cerebral palsy caused by a brain injury (HIE) at her birth. 
 
“Elodie’s condition has been the biggest thing that has happened to our family, it has been immeasurably life-changing for us, but she takes it in her stride”
 
Nicola had a normal pregnancy, but did experience mild pre-eclampsia in her final week. This did not concern her and she went in to Poole Hospital to give birth to her first child with the usual nervousness but nothing more.  
 
The moment of Élodie’s birth was hugely traumatic for Nicola, as it became apparent that Élodie was not breathing following delivery. Medical staff whisked her away to begin resuscitation, which took over 20 minutes. 
 
“That moment was nothing like I thought it would be, not like you read about, there is no joy and no-one is speaking to you. It is the absolute opposite of what you prepared for. The whole thing was hugely traumatic for me and for my husband” 
 
Once resuscitated Élodie was placed in an incubator so that cooling treatment could begin and within hours she was rushed to the neonatal intensive care unit at University Hospital Southampton without Mum or Dad. 
 
Elodie walking“We were told that she wasn’t going to survive. This wasn’t because of the HIE itself but all of the after effects of the condition on her body and brain. I didn’t know if she would survive in those first few hours, or when she was transferred if she would make it. I was worried that she was all alone. I’d not even held her properly and now she was so far away from me”
 
The family were not reunited until the following day. 
 
In those first few hours and days doctors were not able to tell the family much about their daughter’s condition or prognosis. 

“No-one knew if she was going to live or die. The doctors didn’t tell us much about what was happening. When I was able to I did what anyone would do, I started Googling HIE and couldn’t find anything”
 
The family were faced with the difficult decision of deciding if they would turn off Élodie’s life-support machine and deal with the fear that she might not be able to breathe without technological support. At one point it seemed that she would lose Élodie and the hospital chaplain was called. Thankfully Élodie survived and began to thrive without breathing tubes and with less medical support.  
 
“What could I find to hang my hope on? You don’t want false hope; because that is not helpful, but it is critical to have something to give you hope and get you through. You are living in the unknown, having expectations and hope gets you through. HIE takes all of that hope away”
 
Elodie with her familyNicola believes that our HIE project will help parents like her at this difficult and stressful time, not only providing hope but giving parents a means of talking about their child’s condition and finding a way to plan for a future which is so different to that which they were expecting. 
 
“In our case it was definitely what we wanted. Having clear and concise information, so you can tell other people what is happening”    
 
Élodie is now doing well and defying all expectations. 
 
“There is still that daily uncertainty. You can’t really just live in the moment because you are worried about what lies ahead”
 
Ultimately Nicola believes that this study will help parents like her find hope and to plan for the future. 
 
“The problem with HIE is that it’s unknown and you can’t paint a picture of the future. And that is so hard as a parent, but it is also hard for the child”
 
 

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