Family hopes baby girl who underwent open-heart surgery will be home for Christmas

Helen Kelleher speaks to the mother of a six-month old child who successfully underwent open-heart surgery

Ivana Russell and her baby girl Lillyanna Heaphy in the children's ward at Cork University Hospital before travelling to Dublin for her heart operation. Picture: Larry Cummins

Approximately 500 children require open-heart surgery in Ireland each year — over half in the first year of their life and some as young as just two days old. Paediatrician with Expertise in Cardiology at Cork University Hospital, Dr Daragh Finn says congenital cardiac disease is the most common type of birth defect affecting almost 100 babies born in Ireland each year — the most common being ‘holes in the heart’ or ‘problems with the valve’. 

There are genetic components to these conditions and the risk is increased in syndromes like Down Syndrome or Digeorge Syndrome but in most cases, he says, it is unknown why they occur. While heart defects can be detected during pregnancy some are not found until a baby is born which was the case for six-month-old Lilyanna Heaphy who was born at CUMH on April 29 this year. Following her delivery, parents Ivana Russell (26) and Shane Heaphy (27) were told Lilyanna had been diagnosed with Down syndrome and there was a 50% chance she would require open-heart surgery — a diagnosis which was confirmed following echocardiography (ultrasound of the heart) later that same day.

“It was very upsetting and scary as nothing had shown up in the scans during my pregnancy so we had no idea anything was wrong”.

Six-month-old Lilyanna had her open heart surgery at Our Lady’s Hospital for Sick Children, Crumlin on November 25 and her parents are hoping Lilyanna will be home with her family in Gurranabraher in Cork for Christmas. 

Baby girl Lillyanna Heaphy in the children's ward at Cork University Hospital. Picture: Larry Cummins

“It has been so hard as we have been in and out of hospital so many times with cardiac failure, pneumonia and lung infection, monitoring her tube-feed. It can be very frightening when she is unwell and finding it difficult to breathe and her colour changes but we are lucky that we do live close to the hospital.” 

Ivana says nobody is more excited to have Lilyanna home for Christmas than her six-year-old brother, Shane, who she said loves to cuddle her.

“It has been a tough few months. We are so grateful for the compassion and kindness we have received from all the nurses and doctors and their hardworking staff and also to our neighbours and friends. Because of Covid-19 I had to go to all the appointments on my own and meet the heart surgeon in Crumlin on my own, which I found really hard. I would be lost without Dr Finn who has been so kind and helps me to understand everything and gives myself and Lilyanna so much time and support”.

Dr Daragh Finn, Paediatrics and Child Medicine. Picture: Larry Cummins

CUH is the first paediatric hospital outside of Dublin to provide cardiac care for children as part of the All Ireland Congenital heart network. Dr Finn was appointed Paediatrician with Expertise in Cardiology to CUH in 2018. Prior to this all children like Lilyanna would have had to travel to Dublin either as an emergency following delivery or over the first weeks of life for echocardiogram and regular follow-ups thereafter.

“It means so much to families that they can be near their loved ones. Frequent travelling can be emotionally, physically and financially draining for parents of a newborn child. Now the vast majority of their care before and after surgery can be provided here at CUH”.

Dr Finn explains that it can take a lot of work to prepare these children for surgery. Lily Anna was seen weekly by nurses, doctors, dieticians and speech and language therapists in the Seahorse Ward. She also required two long admissions in CUH with heart failure and over the last few months has required all her feeding through a tube that Ivana has been trained to use.

Ivana Russell and her baby girl Lillyanna Heaphy. Picture: Larry Cummins

Making a difference also is the funding provided by Munster rugby player Billy Holland and his wife Lanlih who raised over €550k for Our Lady’s Hospital, Crumlin, Ronald McDonald House and the children’s wards at CUH following their appearance on The Late Late Show in January in memory of their daughter, six-month-old Emmeline, who passed away in May 2019. Emmeline, who was born in November 2018, was diagnosed with a heart defect antenatally and her parents were given a devastating diagnosis when she was just three weeks old.

The Hollands spoke about how much they appreciated the public support of their GoFundMe appeal and how happy they are thinking about the tangible impact this money is going to make to sick children and their families.

Dr Finn says the fundraising from the Emmeline GoFundMe appeal has really helped improve the service. CUH were able to buy a paediatric echo machine for Seahorse children’s ward which means children at CUH can now have echos performed in a child-friendly environment (previously all echos were in the adult unit). The quality of echos are much improved and less children have to travel to Dublin for these tests. They bought an ultrasound machine for intravenous access which means doctors can locate the veins a lot more easily and get vascular access with less pain/skin pricks for children and also a cold cot for children who pass away on the ward so the hospital can keep them cold and allow parents spend more time with them. He says by working in close partnership the teams in Cork and Dublin have been able to deliver safe care during the Covid-19 crisis for those children with congenital heart disease needing emergency or urgent surgery.