Expert calls for more resources to help detect congenital heart problems in babies while still in the womb, writes Claire O'Connell
Ireland needs more resources to help identify babies with congenital heart problems while they are still in the womb, so they can receive optimal care immediately after the birth.
That's according to maternal-foetal medicine expert Prof Fionnuala McAuliffe, who heads the foetal cardiology programme at the National Maternity Hospital (NMH) at Holles Street in Dublin.
Eight out of every 1,000 babies in Ireland are born with congenital heart defects that may affect the organ's rhythm or structure, and major heart problems account for 40 per cent of overall deaths from congenital defects.
Mid-pregnancy is the best time to look for foetal congenital heart defects using a non-invasive ultrasound echocardiogram, explains McAuliffe, a consultant obstetrician/gynaecologist at the NMH and professor of obstetrics and gynaecology at University College Dublin.
"It's a probe on the belly and you focus in on the heart," she says. "Basically it's a detailed look at the anatomy of the heart and it's really about the expertise of the person doing the scan and spending the time to do it carefully.
"Around 18-20 weeks into the pregnancy is a good time to look at the heart because the baby moves around and you get a better view," she says.
McAuliffe set up the clinical service three years ago to screen pregnancies where there is a relative risk of congenital heart defects, such as family history or the mother having diabetes.
In addition, all parents at the NMH are offered a general anatomy scan in mid-pregnancy, and if the sonographer spots a potential problem with the heart, they can avail of the specialised cardiac screen within days, according to McAuliffe, who also gets referrals from other centres in the Republic.
"If we got a fax today that there was a problem with the heart or the brain, you can imagine that people don't want to be waiting around," she says.
Since 2004 the cardiology programme has screened 578 foetuses in the womb, of which 91 were found to have congenital heart defects.
"The majority would be structural deformities so you might have a hole in the heart," explains McAuliffe. But she stresses that the echocardiogram won't pick up all abnormalities. "The heart is very small and it's often quite difficult to pick up these things. But we would pick up about 75 per cent of major problems with the heart," she says.
Many of the cardiac scans turn out to be normal and can provide reassurance to the parents, but if there is a problem, the paediatric cardiologist gets involved, says McAuliffe.
"The families would go to Crumlin and meet a team during the pregnancy who would be looking after the baby, a cardiac nurse and we would have social workers. There could be travel and support issues, and emotional support obviously."
Being forewarned about potential heart problems can help improve the baby's chances of doing well after birth, she adds.
"If we know about a major heart defect prior to the birth, then at birth we can have a neonatal team available and there's good evidence that they do better; they are in better shape going into surgery.
"If we don't know about it until maybe the baby gets sick after the birth, there's a delay in finding the problem."
In addition, if the parents know about a congenital heart defect early on, they have more time to become informed, McAuliffe says.
"Sometimes at birth the surgeon and cardiologist have to make decisions - should we just let nature take its course, should we offer surgery - and if the parents are aware of the condition they can participate in those decisions, which are very important."
However, she sees a need for more resources in Ireland to help pick up on foetal heart problems during the pregnancy.
"A lot of these defects are missed on routine scans because heart defects are generally quite difficult to pick up. Then if that baby has been passed as normal the heart problem wouldn't come to light until after the birth."
McAuliffe believes that ideally resources should be made available here so all parents are offered a general scan in mid-pregnancy, where initial problems may be spotted and referred on to the cardiology service. "Not everyone offers the routine 20-week scan because there are resource issues with time and expertise, but that should be aimed for," she says. "We need to improve on what we have. The main challenge is to improve the standard of routine 20-week scanning so that more of these defects are picked up," she says.
McAuliffe now works with sonographers around the State to improve their awareness of heart defects as they perform general anatomy scans.
"Most of the congenital heart defects are in the low-risk women, so the better the routine scan can be done within the time slot, the more defects will be picked up."
She adds that more support is also needed for families of babies who are born with a congenital heart defect. "We could do with more resources, like a nurse or midwife dedicated to them," she says.
But after three years she is satisfied that the foetal cardiology programme has benefited many of the babies screened.
"In Holles Street we are picking up a good number of those major heart problems. It has certainly worked well," she says.