Phoebe is an identical twin, born at 30 weeks. The run up to the girls’ birth was stressful and scary, due to how poorly I became with pre-eclampsia.

When Phoebe was born, they did a routine cranial ultrasound to check for something called an intraventricular haemorrhage (IVH). Unfortunately, Phoebe had a grade 2. The doctors told us they needed to keep a close eye on her, as this had potential to get worse. On day seven, our worst nightmares came true and it was confirmed that Phoebe had developed a grade 3 IVH. They explained that we needed to monitor Phoebe’s head circumference to make sure the cerebrospinal fluid (CSF) in her brain was draining as it should. She was to have weekly cranial ultrasound scans, to monitor the ventricle size and check how the taps were working.

We were transferred back to our usual hospital, nearer home, where they monitored Phoebe’s head circumference daily and scanned her weekly. One morning a nurse mentioned that Phoebe’s head looked large and, when checked, we discovered that her head had grown 2cm in two days.

The scan showed that she had enlarged ventricles, meaning she had hydrocephalus. They did two lumbar punctures to help clear some fluid. This was semi-successful, as they managed to get half of what they wanted. Over the next few days Phoebe’s head continued to grow and we were transferred back to the specialist hospital for an Ventricular Access Device (VAD) to help remove the excess fluid.

This initially helped and we were sent home with twice weekly taps on the device. Unfortunately, the reduction in taps to the device meant an increase in head circumference and an MRI demonstrated that Phoebe needed a shunt. We were terrified and so upset by this. I felt like all the information I googled about IVH and hydrocephalus was negative and none of it helped me understand how this diagnosis would affect Phoebe. I was scared about another surgery, scared about malfunctions and infections, but I knew she needed it to give her the best possible outcome.

Phoebe had her shunt inserted in January 2024 and has thrived since then. She has monthly head measurements, and she has hit every milestone so far.  She is the happiest, cheekiest little girl and is no different to her twin sister. I know having a shunt is scary and Phoebe may endure issues or complications in the future, but we take each day at a time, and we celebrate everything and every milestone she achieves. She brings so much joy and light to our lives.

I truly believe if the hospital hadn’t acted so quickly and inserted the VAD, then we wouldn’t be in the situation we’re in today with a happy healthy baby girl.

I really hope by sharing Phoebe’s story, it gives another family positivity, hope and strength going through something similar.

Top tips

• Take each day at a time!
• Trust your instincts if you think something isn’t right. You know your child best.
• Play, read, sing to your child as much as possible!
• If you go on Facebook groups or do internet research, remember that people usually only share their stories if they are bad or post on the worst day.  You don’t always see the full picture!