19 July 2022

HIE (Hypoxic Ischemic Encephalopathy)- Karly & Isla’s story

Karly Bowers (nee Stickland), an infant school teaching assistant, gave birth to all three of her children Isla, 10, Ava, 7, and Aidan, 3, at Princess Anne Hospital, Southampton. Isla was diagnosed with HIE, Hypoxic Ischemic Encephalopathy (HIE) is a serious birth complication which affects 1 in 1,000 babies in the UK each year.

With Isla, my first-born, it was a real textbook pregnancy. All the scans and checks were fine, and I didn’t even suffer with morning sickness!

She was born flat which means that she needed five rescue breaths to help stimulate her, before she was monitored in the room for 22 minutes. She wasn’t very responsive and didn’t feed, so at midnight she was taken to the neonatal intensive care unit. She was having clinical seizures and her blood gases were coming back so abnormal that they thought the machine was broken.

It was at that point they took Isla to put lines in her tummy and needed some privacy to do the initial assessments. It was the longest five hours of our lives.

The clinicians came to our room and asked if they could commence hypothermia treatment to cool her brain to help minimise any risk of brain injury as she met cooling criteria, to which we agreed. This treatment would last around 72 hours.

The next day around 6.00pm Isla had a massive seizure. That’s when we were asked if we wanted the rest of the family to meet Isla as they were not sure if she would survive the night. They were trying various anti-seizure medications to help stop these, and thankfully the last treatment available worked.

Over the next 72 hours they continued the hypothermia treatment.  The rewarming process after treatment is a very worrying time as this is when seizures can return, however, we are so thankful that Isla has not suffered from a seizure since. 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.

Once discharged, Isla had regular hospital appointments for her cerebral palsy and was introduced to the speech and language and occupational therapists after a few years. Currently she has annual appointments with the neurology, paediatrician and orthopaedic teams, and more frequent contact with physiotherapy.

Isla, now 10, attends mainstream school, and is a feisty, sassy little girl. She does suffer from cerebral palsy and development delay, caused by the brain injury from a lack of oxygen around birth, but she copes as best she can with such determination.

infant healthcare, Southampton Hospitals Charity

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