Nelly

Nelly was born in February 2024 after a ‘normal’ pregnancy, but within hours her parents were facing unexpected news.

Now, one year after her open heart surgery she is celebrating her first “heartiversary” – Nelly is thriving, and her family have raised over £11,000 for Children’s Heart Surgery Fund in her name.

Nelly had life-saving open heart surgery at just 7 months old at the Leeds Congenital Heart Unit. One year later, Nelly is celebrating her first heartiversary.

Along with a very small chin and cleft palate, she also had a very small tongue. She would need specific bottles for feeding, required cleft palate surgery around the age of one – but the main concern was her small tongue potentially blocking her airway.

 

The first night on the ward she stopped breathing five times and turned blue.

 

In the morning the nurses from the Neonatal Intensive Care Unit (NICU) came over and explained due to her airway issues she wasn’t safe to be left unattended and needed to be rushed straight to the neonatal unit. Over her first week things progressively got worse.

 

After a number of consultants seeing her and tests being done, we were pulled into a side room to be told that it was likely Nelly had some form of genetic syndrome. She has a number of medical issues that were not the ‘norm’, and they confirmed Nelly had Tetralogy of Fallot (ToF), a type of congenital heart disease.

 

We were told she would require open heart surgery at a young age and without the surgery, she wouldn’t make it past the age of two.

 

After a month in NICU between Burnley and Leeds Children’s Hospital, Nelly was allowed home. Every week there were hospital visits to see various consultants as well as regular visits from nurses from different teams to the house.

At three months old Nelly started to have severe sleep apnoea so was readmitted into Leeds where she had her first general anaesthetic. We were told at that point she had a grade 4 airway and would need to be put on a ventilator throughout the night to stop her oxygen dips from happening.

 

In September 2024, at seven months old Nelly went in for her heart surgery.

 

Getting the phone call to say she was in PICU (paediatric intensive care), that we could go and see her, and everything had gone to plan felt like all the weight in the world was lifted off our shoulders. We had our baby back and she was ok.

Since her heart surgery, Nelly has had her cleft palate repair and been diagnosed with a rare genetic condition called ‘Catel-Manzke Syndrome’. She is now exactly one year post-op and is a thriving, funny, loving and a very sassy, independent little girl.

 

We’d like to say thank you to all teams involved in Nelly’s medical journey so far – with an extra special thank you to Suzanne Dickins our Cleft Nurse Specialist, and Rachel Lyles our Community Children’s Nurse.

 

If it wasn’t for the cardiology team and specifically Carin van Doorn, we might not still have our little Nelly with us here today, and we want to do everything we can to ensure families in similar situations to ours get the same level of care and support in the future.

 

Throughout this time, Nelly was provided with daily essentials such as nappies, washing facilities and formula, and as soon as she was alert enough, was provided with suitable toys to keep her distracted and an iPad to keep her entertained. She was also given a Katie Bear, certificate and medal from CHSF (as shown below) – not to mention all of the medical support and machines monitoring her sats, as well as 24 hour nursing care.

As parents, we were provided family accommodation in the hospital grounds, free parking during her stay, food vouchers were made available for local supermarkets, activities to keep our minds busy and continuous ongoing emotional support.

 

As a huge thank you to the cardiac team at LGI, we have this year been raising money for Children’s Heart Surgery Fund.

We’re so grateful to Nelly’s family for sharing their story and fundraising for CHSF in Nelly’s name.

After setting out to fundraise £1,000 in 2025 they have now reached a phenomenal £11,716 to support our heart unit, patients and families. We are so thankful. Thank you all! #BecauseOfYou

If you’d like to donate to ‘Nelly’s Grand 2025’, you can do so here: www.justgiving.com/page/nellys-chsf2025

We can only keep being there for our life-saving heart unit, patients and families with your help. Make a donation today to help us continue our vital work.