H.I.E. Awareness Day is an opportunity to raise awareness, share stories, build community and honour strength.
Today marks H.I.E. Awareness Day: A day of reflection, advocacy and community for families affected by Hypoxic-Ischemic Encephalopathy (H.I.E.). If you’re reading this, chances are you or someone you love has been affected by H.I.E., a diagnosis that changes lives in ways both profound and unexpected.
What is H.I.E.?
H.I.E. occurs where there is a lack of oxygen and blood flow to the brain. It can occur before, during, or shortly after labour. It can happen in older children too.
H.I.E. can cause injury to the brain. The severity of this can vary greatly. You may hear H.I.E. being graded from 1, which is mild to 3, which is severe.
The effects can be minimal with no lasting effects, but there can also be developmental delays, cerebral palsy, epilepsy, or other long-term disabilities.
How is H.I.E. caused?
There are many different causes of H.I.E.
Common causes include:
- Complications during labour or delivery (like umbilical cord issues or prolonged labour)
- maternal blood clotting disorders
- trauma during delivery
How common is H.I.E.?
According to the Office for National Statistics H.I.E. affects 3-4 in every 1,000 babies.
Last year there were 640,370 live births in England and Wales, which would equate to approximately 50 babies a week potentially experiencing H.I.E.
Living with H.I.E.
Every H.I.E. journey begins differently. No parent is ever truly prepared for a diagnosis like H.I.E. It’s often a whirlwind of emotions: fear, grief, guilt and hope all tangled together. The early days may feel like you’re operating in survival mode – learning medical jargon, advocating for treatments and living day by day.
However, it’s important to remember that the path forwards with H.I.E. is never linear. Some children experience minimal effects and go on to thrive. Others face challenges that require lifelong care. No matter where children fall on that spectrum, it’s vital to ensure that families have the right support behind them.
Over time every milestone is celebrated – no matter how small. A first smile, a new sound, a moment of eye contact. Parents become experts in therapies, adaptive equipment and advocacy on behalf of their children, forging a new kind of normal.
The Power of Community.
Living with H.I.E. can be described as a rollercoaster. There will be highs and lows. Certain situations may trigger certain feelings when least expected. However, there is support out there.
One of the greatest comforts to many parents / caregivers of children with H.I.E. is knowing that they are not alone. Today (and every day) is an opportunity to connect with others who understand the complexities of an H.I.E. diagnosis, to share stories of resilience and to educate others about the condition.
If you are a parent new to this journey, know this: You are not alone. There is a vast and compassionate community ready to support you. There will be hard days, but there will also be moments of joy, laughter and immeasurable love.
To those living with H.I.E., to the parents who advocate tirelessly, to the caregivers who give their all – today is for you. Let’s spread awareness, foster understand and continue to lift each other up in solidarity.
For more information and support, please visit PEEPS.
Hannah Carr is a Legal Director and Senior Solicitor and says: “Behind every H.I.E. diagnosis is a story that deserves to be heard, a family that deserves answers, and a child who deserves the best possible future. Either way, it is important to know that support is always available.”
MDS is a specialist medical negligence law firm. We specialise in claims involving cancer, maternity, and cauda equina syndrome. Our expert solicitors represent clients all around England and Wales, and we are dedicated to helping people who have been injured by medical negligence.
Our solicitors have extensive experience of representing clients and their families whose lives have been affected by medical negligence Click here to read more about how we can help you, and here to read our client’s stories.
If you are concerned about any care that you or a member of your family has received, please contact our experienced team on 0116 254 7456 or email: enquiries@moosaduke.com. You can also enquire online by clicking here.
