On Christmas day 2019, just 22 days after her birth, Anest’s parents Elin and Emyr received the devastating news that their little girl was in heart failure.
Anest needed urgent care and was immediately helicoptered to a specialist unit in Cardiff. Unfortunately, with no room for mum or dad, they had to endure an agonizing 3-hour drive fearing the worst.
Four holes were found in her heart – but she was still too small for surgery, a pulmonary artery band had to be urgently fitted. The procedure went well, but Elin and Emyr experienced another unexpected blow – Anest was diagnosed with the genetic condition DiGeorge Syndrome.
Meeting their WellChild Nurse
Over 2 months Anest was admitted to HDU and ICU 6 times with breathing and other difficulties. It was here that the family met WellChild Nurse, Rhian.
Elin and Emyr had been finding it difficult to keep up with all the different treatments Anest needed. The support and guidance of Rhian was like a weight being lifted.
Rhian took care of everything we needed and eliminated a lot of worry for usAnest’s mum
Separated during lockdown
Whilst Elin and Emyr started to prepare for life at home with Anest and their 3-year-old son Deio; the pandemic hit. The family faced another agonizing decision – having to separate during lockdown. Elin stayed in hospital with Anest whilst Emyr returned home with Deio. Rhian saw the impact the separation was having on the family and arranged a weekly visit.
Rhian always went above and beyond her duty of care...She was a big support during a very challenging time, and I will always be grateful to her.Anests's mum
Learning new skills
As Anest grew stronger, her parents met WellChild Nurse, Laura who trained them with the skills they needed to care for Anest at home and this day finally came in July.
She will still need a further operation and it is still unknown how DiGeorge Syndrome will affect her as she grows. But since being home Anest is thriving; she is trying pureed food for the first time, has good hand-eye coordination and is sitting up independently.Share your story