Family ‘turned upside down’ by death of beloved 21-month-old with Down Syndrome

The coroner recorded a narrative verdict at the inquest into the death of Nancy Coote Guilfoyle who died on October 1, 2023

Paula Coote holding a photo of her daughter Nancy Coote with Aoife Bromley, Niamh Ní Mhurchú, Callan Tansey Solicitors, and Aileen Coote, Stephanie and Paddy Garrihy, and John and Gillian Coote, at the Coroners Court in Kilmallock. Picture: Brendan Gleeson

The mother of a 21-month-old girl with Down Syndrome said the family’s lives were “turned upside down” by her sudden death after her inquest recorded a narrative verdict.

Nancy Coote Guilfoyle died on October 1, 2023. Her mother Paula said the family, including Nancy’s two sisters, were left with “broken hearts”.

“We will never be the same again,” she told coroner John McNamara in Kilmallock. 

“We wake up every morning with the brutal realisation that Nancy is gone and isn’t coming back. 

She was an absolute joy, she was full of affection, and our home was filled with love. 

Nancy, of Crosshaven in Cork and Ennis in Clare, showed “great strength and sass” despite worsening health, having covid-19, chicken pox, and suspected pneumonia between December 2022 and April 2023.

Her father Ewan said there is a “Nancy-sized void in my soul”.

Nancy, born in December 2021, was a patient at Cork University Hospital and Children’s Health Ireland (CHI) at Crumlin for a congenital heart condition. She had open heart surgery on May 5, 2022 at Crumlin.

On July 8, she had an echocardiogram there, a specialist heart scan.

The court heard from CHI at Crumlin cardiologist Adam James, who scheduled a follow-up scan for six months. This did not happen, he acknowledged.

CUH paediatrician Darragh Finn raised smiles from the family, describing Nancy’s character as a patient. Medical notes showed CUH staff noticed in January 2023 that a scan was due “soon”. He apologised that this was not copied to Crumlin, which is the lead hospital.

In July, an echo carried out in Cork raised concerns about a heart obstruction. This post-surgery complication is seen in 10% -15% of such cases, the court heard. A lengthier scan, under sedation, at Crumlin followed.

21-month-old Nancy Coote Guilfoyle of Crosshaven Co Cork and Ennis Co Clare has left a 'Nancy-sized void in my soul', her father Ewan said. Picture: Brendan Gleeson

A joint meeting on September 14 decided Nancy would have surgery within three months. That month, Nancy missed days at creche due to illness. On September 29, she appeared “pale and clammy”, Ms Coote said. On September 30, her father took her for the weekend in Ennis.

However, her condition worsened, and he took her to University Hospital Limerick (UHL) that night.

UHL paediatrician Mohammad Asghar assessed Nancy at 1am, by which time staff had given her antibiotics, as per the sepsis protocol.

At 2.23am, Nancy “went into sudden cardiac arrest” and could not be revived.

Ms Coote was called again during the night by Mr Guilfoyle and arrived at 6am.

Coroner John McNamara noted autopsy findings Nancy had extensive bronchopneumonia, ischaemic myocardial necrosis, and progressive left ventricular outflow tract obstruction.

It indicated she had viral and bacterial infections, which put “additional strain” on her heart.

The coroner recorded a narrative verdict, meaning a factual summing up of events, as “the most appropriate”. The family agreed.

He endorsed a recommendation put forward through their barrister Alistair J Rutherdale, instructed by solicitor at Callan Tansey, Niamh Ní Mhurchú.

Specialist cardiac centres and regional centres should “clearly communicate” around dates for echos and appointments. Specific dates should be set “as soon as practical”, this said.