The mother of a baby, born with a hole in his heart, has shared her experiences as part of an initiative to raise standards of care for congenital heart disease across Scotland.
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.
Helen 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 in Musselburgh, East Lothian, 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.
It was during that period she felt there was a difference in the availability of services and support in Glasgow and other parts of 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 on to a group set up by Healthcare Improvement Scotland to develop national standards for adult and paediatric CHD care in Scotland.
Helen 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.
Among the recommendations in the standards, are also to improve detection rates of CHD in unborn babies.
CHD is the most common congenital abnormality, affecting approximately 1% of babies. A quarter of babies with congenital heart disease require medical intervention in the first year of life. Around 20,000 people with CHD currently live in Scotland.
Helen, who has since given birth to a daughter Bobbie (3), 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 of the healthcare system and I’m hopeful that 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 – they set out clearly what people can expect to experience.
“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 congenital heart disease are already facing terrific stress, so it is wrong that levels of care and support differ across Scotland.
“Everyone who has a congenital heart condition deserves the best start in life, irrespective of their postcode.
“We are delighted that Healthcare Improvement Scotland has shone a light on the inequalities and developed national standards to reinforce best practice across our health services.”