Julie’s son Ollie was born with a CHD, which was not detected during pregnancy, and had to have emergency heart surgery within the first twenty-four hours of his life.
During her first pregnancy Julie had experienced consultant led care at her hospital appointments and was happy she knew what to expect when she discovered she was expecting her second child. Julie attended her 20 week scan, where the sonographer did not appear entirely confident with the view of the baby’s heart. She was then asked back for multiple additional scans, one of which was conducted by a consultant, and after a total of five scans, it was concluded that everything seemed fine.
Julie still suspected something was wrong, and it was decided that her baby would be examined at birth by a paediatrician. There were additional concerns about the baby’s growth so she continued to attend scans at her local maternity hospital. At her scan in week 36, Julie recalls concerns raised by the same sonographer who had expressed uncertainty at week 20; so Julie was asked back for another scan the following week. Julie says that, at that new scan, once again any concerns were dismissed and everything deemed fine.
Julie’s son Ollie Joshua Collins was born on 28 March 2013 during the evening, but he was not checked over at birth. He was struggling to feed but it was not until the following morning, when a midwife came to check, that medical staff realised he was what Julie describes as ‘a dreadful colour’. Ollie had low oxygen levels, and upon examination it was confirmed that he was seriously ill and needed urgent specialist attention.
Julie’s daughter came to see Ollie before he was transferred to a specialist hospital, as his fate was uncertain. Her worst fears were confirmed as a cardiac consultant told Julie and her partner that Ollie had a congenital heart defect called transposition of the great arteries. The consultant said the worst thing was that they didn’t know about Ollie’s condition beforehand, and when Julie told him about all her scans, he explained that they should have been followed up, and she should have given birth with a cardiac team ready.
Julie says: “my baby wasn’t even 24 hours old and he was fighting for his life.”
Ollie had a balloon septostomy the following morning, but had to wait until he was 19 days old to have his arterial switch.
“As we never knew about Ollie’s condition in pregnancy, we as a family had our lives turned upside down,” Julie says. “We kept things as normal as possible for our daughter, ensuring one of us stayed at home with her overnight. We were honest with her and spoke about Ollie’s surgery and this seemed to help. She came to visit a lot and soon knew what all the equipment was for!”
Ollie’s recent cardiac check-up was positive. He still has leaking of the valves but his cardiologist and consultant don’t seem concerned at this stage.
If Julie had known about Ollie’s TGA, her and her family would have been better prepared. “I wasn’t aware of CHD until Ollie was born and was astounded to find out there are so many babies born with CHD,” says Julie.