Hypoxic Ischemic Encephalopathy (HIE) Research Appeal

Help us to understand the long term impact of HIE on patients and families.

Donate today!

Hypoxic Ischemic Encephalopathy (HIE) is a serious birth complication which affects 1 in 1,000 babies in the UK each year. Lack of oxygen and/or blood flow to a baby’s brain before, during labour or at birth, can lead to a brain injury or HIE.

This type of brain injury range from mild to fatal and effects areas of the brain that are vital for motor coordination, learning, and memory function. After a normal pregnancy, babies born with HIE can fully recover and have no long-term health problems.

Unfortunately, some will need ongoing healthcare support and face uncertainty about how the brain injury will affect them in the long run.

With your support, we can provide families with the help they need and make sure they aren’t facing an HIE diagnosis alone.

infant healthcare, Southampton Hospitals Charity

Without research into the impact of HIE, we are not able to offer parents the best possible support whilst their baby is poorly. But with your help, we can improve the support available to families.

When a baby is diagnosed with HIE, it can be a distressing time for parents and families. The experience can be extremely isolating, which is why we want to do more to support

The purpose of this research project is to build a better understanding of how to support parents, and patients with HIE. There are three main areas of this research:

  • to understand parents’ experience, view of the treatment their and stay  in the NICU (Neonatal Intensive Care Unit).
  • to understand how this experience has impacted their life, and their experience in raising a child with HIE
  • to understand parents’ emotional experiences

The impact of HIE

Karly and Isla’s story:

 

On day five Isla had an MRI scan to check for possible brain injuries.  From the scans, doctors could see clouding, but they didn’t know how it would affect her development. Would she be able to walk? Could she talk?

It is that unknown factor that is so hard for a parent to deal with.

We stayed in hospital for 12 days with Isla on the unit in the family room as she was so poorly, and she continued to stay in the neonatal unit for a further five weeks. Her health would go through swings and roundabouts, where she developed a serious blood clot affecting her kidneys.

She needed nine weeks of blood thinning medication after discharge from the hospital, so we visited every two days to have the required checks.

When we eventually brought her home, we used baby care monitors and a sensor mat when she was sleeping to constantly check that she was ok.

Seeing Isla so unresponsive for those few hours did traumatise me and led to PTSD. At home I’d have to keep going into her room to make sure she was still breathing whenever she was sleeping.

We were at a loss at what to do, not just for us, but to help Isla. We weren’t aware of any local groups or charities that could help, and we felt like we were the only ones.

And that’s why research into HIE is so important – there are very few online resources where you can find out more about your child’s condition and connect with other parents and families going through similar experiences.

Read more about Isla’s story here