Musselburgh: Mum now helping others after son’s hole in heart scare

Helen Zollinger has welcomed the country’s first ever standards for congenital heart disease (CHD), produced by Healthcare Improvement Scotland.

The standards aim to ensure that consistently high levels of care and services are offered to all patients diagnosed with CHD and their carers.

Helen’s son Woody was diagnosed with a hole in his heart at her 20-week scan while she was pregnant.

She said: “It was a complete and utter shock. All of a sudden, my husband Stewart and I had to come to terms with the fact that when our baby was born, he was going to need major heart surgery.

“As parents, finding out your child has a heart problem is traumatic enough without then feeling you have nowhere to go to for support. I just found that baffling.”

Helen and Stewart, who live at Monktonhall, have spent a lot of time at the cardiac ward of the Royal Hospital for Children in Glasgow, the specialist unit for the type of heart defect Woody suffers from, since he was born five years ago.

Helen Zollinger with son Woody

During that period, she felt there was a difference in the availability of services and support in Glasgow and elsewhere in the country.

She said: “I had a meeting with some key members of the cardiac team in Glasgow and they explained that the structure for cardiology care was different across the country. I found this really problematic, as I felt the support we were able to access in Glasgow fell away when we were discharged and returned home, and this seemed wrong to me.”

At that point, Helen was invited onto a group set up by Healthcare Improvement Scotland to develop national standards for adult and paediatric CHD care in Scotland.

She has been able to share her experiences along with other patients, carers and healthcare professionals which have been used as the basis of what the standard for services should be in future.

She has also highlighted more accessible mental health support throughout the country as being a need, following her own experiences after the birth of Woody, who is a pupil at Campie Primary School.

Helen Zollinger and son Woody who attends Campie Primary School 

Among recommendations in the standards is improving detection rates of CHD in unborn babies.

CHD is the most common congenital abnormality, affecting approximately one per cent of babies. A quarter of babies with CHD require medical intervention in the first year of life. About 20,000 people with CHD currently live in Scotland.

Helen, who has since given birth to a daughter Bobbie, aged three, said: “The standards have shone a light on how beneficial it will be to have consistent levels of care across the country and the same level of support available to all patients and families.

“There’s a huge community of parents of children with CHDs in Scotland and I was able to connect a lot of them to Healthcare Improvement Scotland during the consultation period to add their own thoughts and experiences. I’m proud to have been able to add the voices of people from outside the healthcare system and I’m hopeful the new standards will make a big difference in helping families access a consistent level of care and support across the country.”

Fiona Wardell, head of standards at Healthcare Improvement Scotland, said: “I’m delighted to see the publication of the CHD standards.

“Crucially, you can hear the voices of people and their families throughout the standards. They reflect what matters to patients and carers, and their passion, commitment and enthusiasm in the development group has been a key part of this process.”

The standards have also been welcomed by the British Heart Foundation (BHF).

David McColgan, head of BHF Scotland, said: “The parents and families of babies born with CHD are already facing terrific stress, so it is wrong that levels of care and support differ across Scotland.

“We are delighted that Healthcare Improvement Scotland has shone a light on the inequalities and developed national standards to reinforce best practice.”