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First Ever HIE Awareness Day

Local Parents Set Up Peeps Charity To Help Others In Similar Situation

02.04.2019

Dave Grimshaw, Press Officer | 0114 274 4397

The parents of a girl from Greater Manchester who collapsed shortly after birth causing severe brain damage are organising the first awareness day about HIE – the problem which caused her condition.

HIE (hypoxic-ischaemic encephalopathy) is a lack of oxygen to the brain of an infant that can cause serious injuries. Many incidents occur before or during labour and affect 3 to 4 in every 1,000 births but most people have never heard of it so the charity is organising the first ever HIE Awareness Day on the 4 April 2019.

Greater Manchester couple Sarah Land and her husband Steve founded the charity Peeps after their four-year-old daughter Heidi was affected by a HIE event in 2015, shortly after birth despite an otherwise healthy pregnancy.

Peeps is the only UK charity solely dedicated to raising awareness of hypoxic-ischaemic encephalopathy (HIE). Peeps supports families by providing information and parent packs, offering a ‘buddy’ service with other parents, providing financial support, and helping families access specialised counselling. 

Heidi has quadriplegic cerebral palsy, epilepsy, is fully tube fed, has a tracheostomy and struggles with her hearing and sight but her parents are determined to ensure she lives life to the best of her ability;  Heidi is a happy and settled four year old who smiles lots despite the challenges she faces.

HR worker Sarah said: “Heidi has a quite incredible list of medical terms to describe her but to us she is a happy four year old and we look to do everyday things like go on holiday, watch her smile and celebrate her achievements - just like any parent.

“We had never heard of HIE before Heidi was born and it was a scary time. Those first few weeks in an intensive care unit were the start of our journey, but once we were home and outside the safety of the hospital bubble, we realised that there was very little support available for people affected. 

“Now four years on we want to change things a bit, reach out to families, especially those at the start of their own journey, and bring the information to them, rather than them having to look for it. 

“The first HIE Awareness Day is really important as it will help us reach more parents who may be affected so that they can access the support that Peeps offers them and hopefully help make their lives easier in some way.”

Jennifer Cawthorne, a specialist medical negligence lawyer at Irwin Mitchell who is supporting Sarah and Peeps, said: 

Expert Opinion
“Sadly we see many families who are affected by serious birth and neonatal injuries, many caused by HIE incidents. Although this might only affect a few people in every 1000 the effects can be extremely severe so it is important that people are aware of all the help and support that is available to them as parents.

“Families may be affected by HIE in different ways, for some children it can cause severe brain damage and cause disabilities, others may not be so severely affected but will still have questions and need some level of support. That’s where Peeps’ advice and experience can really help others.”
Jennifer Cawthorne, Partner

Jennifer is also part of a team of people from Irwin Mitchell’s Manchester office who are in training to trek to the highest point in the Atlas Mountains, Morocco to raise funds for Peeps in June.

Evie’s Story

Rachel Pollard’s daughter also suffered a HIE at birth but at seven-years-old Evie has now been discharged from all care related to the problem. She said: “When my daughter Evie was born she clearly wasn't breathing properly. She had caught the Group B Strep infection and also had Sepsis. She had a few seizures and had suffered a HIE. A team of fantastic nurses came in and inflated her lungs until she was stable enough to move down to intensive care. 

“Because of all the treatment she had to go through in her first week it was seven days until we could even cuddle her. It was day 12 before she was discharged from hospital and I began to feel like a mum. A couple of days later she had an MRI to see what the HIE had done to her brain. 

“Luckily the brain damage was relatively minor and the consultant was sure that it would not really affect how Evie develops. At nearly seven-years-old she has now been discharged from all care relating to HIE and we are getting ready for her to start year 2 at school. 
“We haven't forgotten the fight we all went through – those first few hours were terrifying and we are fully supportive of Peeps and HIE Awareness Day. It’s important that parents know there is support out there for them.”

Aston’s Story

Jeni’s daughter Aston suffered an HIE during a traumatic birth. She was barely breathing and was in a really bad way and had to undergo cooling treatment to stop any further damage to her brain. 

Jeni said: “Our whole world was ripped apart, we didn't hear her cry, we didn't get to hold her, we didn't get any contact until she was about to be transported for cooling treatment. She was all ready to be transported and you could barely see her because of all of the equipment that was strapped to her. She was moved that night where she suffered seizures and we were told to get to her right away because it wasn't looking good. 

“That first week was a blur. The sounds of monitors and bad news being thrown our way over and over again. The news that they didn't think she would breathe on her own and that we need to prepare for the worst. Calling our parents to get them to her so they could meet her and say goodbye. 

“But she defied their odds and Aston has got stronger and stronger every day and we now have a beautiful 6 month old girl. Yes, she has severe brain damage, and she'll probably be disabled, we don't know if she'll be able to walk or talk but we have been so lucky as our girl was almost taken away from us but this little fighter is here and she's amazing. 

“New parents aren't warned about these things. I had never heard of HIE until it happened to us. All these midwives tell you to make sure you get checked out if you have no movements but no one tells you why. My girl was in distress for hours and no one knows why, but they also didn't get her out until it was clearly too late. 

“On HIE awareness day I just want people to share that news that HIE exists, and share that families do need support to get through these dark times.”