Grainne McSteen says her newborn son Ethan "never got the chance" to fight his heart condition
There are calls for more pregnant women to be offered anomaly scans on their babies.
The check is carried out at around 20 weeks into pregnancy, but it is currently not available as a routine scan to every expectant mother in Ireland.
Grainne McSteen's baby Ethan died 12 years ago, a few days after being born with a serious heart problem.
She believes the anomaly scan would have picked up the condition before he was born, and he could have been given specialist treatment as soon as he arrived.
She spoke to The Pat Kenny Show this week about her experience.
"I was only 19 at the time," she explained. "My pregnancy went OK - I had normal scans throughout the pregnancy. I must have got five or six scans, and everything seemed to look OK.
"I went on my due date, and expected to have a healthy baby. When he came out, he was very blue, and he was rushed down to special care."
Grainne expected her son to be returned after a few minutes. But after two hours passed, she had the nurses and midwives attempt to find out what was happening.
"Nobody had an answer, because they didn't know it themselves in special care what was wrong with him yet," she said.
Grainne was told they were sending Ethan to Crumlin Children's Hospital, but since she had high blood pressure she was not allowed travel with her newborn son.
"When I woke up in the morning, I had a phone call to let me know how sick he was. He had a condition called hypoplastic left heart syndrome - that means the left side of his heart never developed in the womb."
Ethan was put under sedation, and doctors warned he would need several operations.
"After around five days, they told us the good news that he seemed to be getting stronger," Grainne said. "They were going to start taking him off sedation to see how he could handle it, so they could look to give him his first operation.
"Later on that evening the nurse came in to talk to me, and explained that after taking him off the sedation they realised he was having seizures. They brought him for a scan and realised he had suffered serious brain damage, that he would just have no quality of life.
"After talking to the doctors on day six, we decided we had to let him go and take him off the machines that were keeping him alive."
Following that, Grainne was allowed to bring her son back to the hospital in Ballinasloe.
"I got to be his mum for the day, got to hear him crying, see him with his eyes open," she told Pat. "He passed away on his one week birthday."
Grainne says she originally thought nothing more could have been done before Ethan was born, but during her third pregnancy she found out about anomaly scans.
She explained: "It's a more detailed scan - it looks more closely at the brain and spine, the four chambers of the heart, and the kidneys.
Grainne - who is now a mother of four - says there wouldn't have been any need to induce Ethan any earlier if a scan had identified the condition - but it could have made a difference after birth.
"What would have probably happened [...] he would have been born up in Dublin, and he would have had a medical team available to him straight away, who would then [have] been able to work on his heart.
"The fact we didn't have the anomaly scan, and it took them so long to realise what might be the problem... he didn't have the chance to fight. It was such a serious condition he might not be here today anyway, but it was more the fact that he never got the chance to fight that condition."
Grainne is speaking out now because she believes there could be other women today in the same situation but do not know it.
She observed: "I think no matter where you are in the country, and no matter what hospital you're getting cared for in during your pregnancy, every woman should be receiving the exact same antenatal care.
"If this scan is available in half the hospitals, it should be available in the other half [...] I just think that 12 years later there are still babies passing away when a scan could make a world of difference."
As of writing, Grainne's petition calling for routine access to the scans has received more than 5,400 signatures.
Professor Louise Kenny, consultant obstetrician and gynaecologist at Cork University Maternity Hospital, is one of those campaigning for extended access to anomaly scans.
She told Pat: "The main issue is that this is a basic standard of care. If you are booking for antenatal care in the UK in any hospital, you would as a matter of course have a 20-22 week anomaly scan. In Ireland at the current time, that scan is only routinely available in selected hospitals
"Outside of the Dublin area, the availability of that scan is very patchy. In Cork University Maternity Hospital, in 2016 we were only able to offer than scan to just over a third of the women booking for antenatal [care]".
In a statement to Newstalk, a spokesperson for University Maternity Hospital Limerick (UMHL) says it offers patients a routine 'two scan' programme, with the scans carried out at 11-12 weeks and 30-32 weeks.
The additional 20-22 week ultrasound scan is carried out for patients "who have particular risk factors" - such as a family history of spina bifida or congenital heart disease.
"The National Maternity Strategy 2016 to 2026 states that all women must have equal access to standardised ultrasound services," the spokesperson said. "UMHL looks forward to working with the HSE’s National Women and Infants Health Programme towards providing this as required."
A spokesperson for South/South West Hospital Group - which operates hospitals in Cork, Kerry, Waterford, Tipperary and other areas - explained: “Whilst all of the maternity units in the South/South West Hospital Group provide a 20 week anomaly scan to women and babies deemed to be at risk (either on site or through the group maternity network), all women attending University Hospital Waterford are offered routine 20 week foetal anomaly scans.”
Professor Kenny says there many reasons for the current situation, including limited resources and personnel - but she specifically highlighted the issues of governance.
She said: "This is a screening test that should be offered to everybody. When we're having to make difficult decisions based on prior risk, invariably we miss the vast majority of problems that this scan is designed to screen for and pick up.
"What we are advocating for is a mastership model to be rolled out nationally for all maternity units," she explained. "What we're really talking about is a single, clinically-qualified individual who has clinical and executive authority with a ring-fenced protected budget."