Impact of pregnancy termination law reforms in Ireland on pregnancy termination rates in the setting of fetal congenital heart disease: A trend analysis

Abstract

Objective

Prior to 2019, termination of pregnancy (TOP) was unlawful in Ireland. We sought to examine the impact of legislative change on TOP for major congenital heart disease (CHD) and its effect on parental decision‐making regarding the options of complex surgery, TOP, or palliative perinatal care.

Methods

This was a trend analysis of second‐trimester TOP for major CHD before and after the law reforms relating to pregnancy termination in Ireland. Retrospective data were collected on pregnancies complicated by major CHD at the largest tertiary referral obstetric center in Ireland from January 2017 to December 2023. Suspected CHD cases were referred to a dedicated fetal medicine/cardiology service. Major CHD was defined as an expected requirement for cardiac intervention in the first year of life. Genetic testing was performed where required, counseling was offered, and individualized care plans were developed.

Results

In a consecutive unselected cohort, 269 of 60 871 screened pregnancies fulfilled criteria for a diagnosis of major CHD. Major CHD was an isolated abnormality in 55% (147/269) of cases, while an extracardiac diagnosis was identified in 45% (162/269). TOP was chosen in 21% (16/76) of cases prior to legislative change and in 20% (39/193) of cases after legislative change (P = 0.158). The TOP rate was 8% (13/147) in isolated CHD cases, compared with 34% (42/122) in the setting of additional abnormalities (structural or genetic).

Conclusion

We observed no difference in the rate of TOP for major CHD before and after TOP law reforms in Ireland on the grounds of fetal abnormality.

Synopsis

Pregnancy termination in the setting of congenital heart disease has not changed significantly in the 5 years since the introduction of access to termination in Ireland.

1. INTRODUCTION

The prenatal diagnosis of congenital heart disease (CHD) allows for a multidisciplinary approach to pregnancy management and perinatal care planning. ¹ Improved prenatal detection and advances in cardiothoracic surgical options require increasingly complex prenatal consultation targeted at enhancing patient understanding and optimizing the perinatal decision‐making process. ² , ³ , ⁴ The risk of in utero fetal demise is influenced by CHD type and coexisting genetic diagnoses or extracardiac structural abnormalities. ¹ Fetal aneuploidy is identified in 30%–40% of pregnancies affected by CHD. ⁵ While early risk assessment for common chromosomal conditions is available from 9 weeks of gestation through non invasive prenatal screening using cell‐free fetal DNA, ⁵ this remains an opt‐in test that is not publicly funded in Ireland, such that aneuploidy‐associated CHD is most commonly identified at the mid trimester anatomy ultrasound examination.

Before November 2018, pregnancy termination for fetal abnormality in Ireland was unlawful in all circumstances, such that women with pregnancies complicated by major fetal abnormality who opted for pregnancy termination traveled to another jurisdiction. The Health (Regulation of Termination of Pregnancy) Act 2018 (https://www.irishstatutebook.ie/eli/2018/act/31/enacted/en/html) ⁶ is an Act of the Irish Parliament that defined the circumstances within which pregnancy termination may be legally performed in Ireland. Termination may be performed in Ireland where the pregnancy is <12 weeks of gestation on maternal request or where there is “immediate risk to the life of or serious harm to the health of the mother.” In cases of fetal anomaly, two medical practitioners who have examined the pregnant woman can agree to a termination of pregnancy (TOP) if they conclude “in good faith that there is present a condition affecting the fetus that is likely to lead to the death of the fetus either before or within 28 days of birth.” In this situation, an upper gestational age limit is not specified. In the setting of an anticipated lethal fetal prognosis, pregnancy termination is now offered in accordance with Irish Law.

Cases of prenatally diagnosed CHD, whether isolated or associated with additional anomalies, that are not expected to result in neonatal death within 28 days of delivery, do not meet criteria for TOP for fetal anomaly (TOPFA) in Ireland. In the event of patient request for termination of a pregnancy that is not consistent with an expectation of lethality within 28 days of birth, patients are made aware of a mechanism for external case review and of the option of traveling to another jurisdiction for a fetal medicine consultation with a view to obtaining TOP in that country.

In order to examine the impact that this landmark legislative change has made on perinatal management of major CHD in Ireland, we sought to compare trends in patient decision‐making pre‐ and post‐enactment of the TOP law.

2. METHODS

This is a 7‐year trend analysis of prenatally diagnosed cases of CHD identified in the largest tertiary care fetal medicine center in Ireland. Major CHD was defined as an expected requirement for cardiac intervention in the first year of life and included cases of duct‐dependant critical CHD. The protocol in this tertiary care prenatal screening service included ultrasound examination at 12–14 weeks for confirmation of gestational age, and a fetal anatomy ultrasound at 18–22 weeks of gestation that included screening for CHD according to the International Society of Ultrasound in Obstetrics and Gynecology (ISUOG), ⁷ American Institute of Ultrasound in Medicine (AIUM), ⁸ and Irish guidelines. ⁹

2.1. Study design

All cases of suspected CHD were referred to the fetal medicine/cardiology service, underwent detailed fetal echocardiography, and were offered genetic testing where indicated. Prenatal diagnostic evaluation and patient counseling were provided by a fetal cardiac team that included fetal medicine, pediatric cardiology, and neonatology expertise. Pregnancy outcome data were ascertained for all cases of prenatally identified major CHD. Patients who chose a perinatal palliative care pathway were offered a consultation with a neonatologist and, since 2019, a pediatric palliative medicine consultant. We examined the care pathways chosen following major CHD diagnosis during a 7‐year period. Care plans were individualized, and a multidisciplinary perinatal plan was determined.

2.2. Ethical approval

Institutional ethics board approval was sought and granted for data collection for the duration of the study. Individual patient consent was not required on retrospective anonymized data.

2.3. Data collection and analysis

Data were collected over seven consecutive years between 2017 and 2023 including demographic data, gestation at diagnosis, cardiology diagnosis, and date of TOP. The details of delivery, intrauterine demise, fetal death, palliative care plans, or surgery where performed were included. Data were obtained from electronic medical records. Study numbers were used to anonymize patient data before data transfer to an Excel (Microsoft) sheet for analysis.

2.4. Statistical analysis

Fisher exact test was used to compare dichotomous outcomes and the Cochrane‐Armitage trend test was used to assess trends. A P value <0.05 was considered statistically significant. SAS version 9.4 (SAS Institute Inc) was used for the statistical analysis.

3. RESULTS

Among 60 871 pregnancies >18 weeks of gestation seen at our center during the study period (January 1, 2017, to December 31, 2023), CHD was identified with prenatal ultrasound in 370 (0.61%) cases. A prenatal diagnosis in 271 of 370 (73%) cases expected to require surgical intervention within the first year of life were classified as major CHD. Two cases were lost to follow‐up (Figure 1), such that 269 prenatally diagnosed cases were included in this analysis.

FIGURE 1.

Total outcomes comparing isolated and complex congenital heart disease (CHD) cases (2017–2023). Minor CHDs were excluded from analysis and included small ventricular septal defects mild to moderate arrhythmias, rhabdomyomas, bilateral superior vena cava, aberrant right subclavian artery, cardiomegaly, dextrocardia, and isolated right‐sided aortic arch. NND, neonatal death; TOPFA, termination of pregnancy for fetal anomaly.

Table 1 demonstrates the CHD pathology and associated diagnoses during the 7‐year study period. CHD was isolated in 55% (147 of 269) of cases, while 45% (122 of 269) were complicated by extracardiac abnormalities (structural abnormalities in 12% [32 of 269]), genetic diagnoses in 13% (36 of 269), or both in 20% (54 of 26).

TABLE 1.

Major CHD with extracardiac diagnosis in 2017–2023 (N = 269).

CHD category	Total, no.	Isolated CHD, n (%)	Genetic + CHD diagnosis, n (%)	Extracardiac + CHD diagnosis, n (%)	Both genetic and extracardiac + CHD diagnosis, n (%)
HLHD	39	23 (59)	1 (2.5)	7 (18)	8 (21)
HRHD	6	4 (67)	0	2 (33)	0
LVOTO	30	18 (60)	4 (13)	3 (10)	5 (17)
RVOTO	26	19 (73)	1 (4)	5 (19)	1 (4)
TGA	29	27 (93)	1 (3)	1 (3)	0
TOF	43	19 (44)	9 (21)	3 (7)	12 (28)
DORV	13	7 (54)	0	3 (23)	3 (23)
AVSD	63	16 (25)	19 (30)	5 (8)	23 (37)
CHB	7	7 (100)	0	0	0
TAPVD	1	0	0	1 (100)	0
DILV	1	1 (100)	0	0	0
Truncus	5	3 (60)	1 (20)	0	1 (20)
RAI/LAI	4	1 (25)	0	2 (50)	1 (25)
CcTGA	2	2 (100)	0	0	0
Total	269	147 (55)	36 (13)	32 (12)	54 (20)

Note: Extracardiac anomalies included dysplastic kidneys, solitary kidney, polyhydramnios, hypoplastic nasal bone, short long bones, duodenal atresia, talipes, heterotaxy syndrome, spina bifida, echogenic bowel, agenesis of cerebellar vermis, cleft lip, TTTS, and bipedal edema. Other genetic diagnosis ++ = Alagille syndrome, 47XXX, Jacobsen syndrome, del ch11q 24.3, monosomy X, copy loss Ch9, Gain Ch11, cri du chat, copy loss Ch16, deletion on Ch.X xq26.1q26.2, tetrasomy of Ch18, T16, tuberous sclerosis, unbalanced karyotype 10, mosaic ring 13 53mb deletion, and microdeletion of ch 17.

Abbreviations: AVSD, atrioventricular septal defect; ccTGA, congenitally corrected transposition of the great arteries; CHB, congenital heart block; CHD, congenital heart disease; DILV, double inlet left ventricle; DORV, double outlet right ventricle; HLHD, hypoplastic left heart disease; HRHD, hypoplastic right heart disease; LVOTO, left ventricular outflow tract obstruction (mitral atresia, mitral stenosis, coarctation of aorta, interrupted arch, Shone complex), RAI/LAI, right arterial isomerism/left arterial isomerism; RVOTO, right ventricular outflow tract obstruction (tricuspid atresia, pulmonary artery atresia/stenosis/Ebstein anomaly); TAPVD, total anomalous pulmonary venous drainage; TGA, transposition of the great arteries; TOF, Tetralogy of Fallot; Truncus, truncus arteriosus.

Liveborn cases that underwent planned surgery or evaluation for surgery accounted for 62% (166 of 269) of overall cases, while 20% (55 of 269) chose TOPFA and 10% (26 of 269) resulted in neonatal death in the context of a prenatally determined and perinatally delivered palliative care plan (Figure 1).

Table 2 demonstrates the constituent cardiac diagnoses in this population and associated pregnancy outcomes. Intrauterine fetal demise (IUFD) was observed in 8% of cases (22 of 269). The most common diagnosis (35%; 22 of 63) for which patients underwent TOPFA was atrioventricular septal defect (AVSD) in the setting of fetal aneuploidy, followed by isolated hypoplastic left heart disease in 33% (13 of 39).

TABLE 2.

Outcomes for major classes of CHD for years 2017–2023 (N = 269).

Major CHD	Total CHD, no.	TOPFA, n (%)	TOPFA in Ireland, n (%)	TOPFA outside of Ireland, n (%)	IUD/stillbirth, n (%)	Live born: palliation plan/NND, n (%)	Live born: catheterization/surgery, n (%)
HLHD	39	13 (33)	8 (21)	5 (13)	7 (18)	10 (26)	9 (23)
HRHD	6	0	0	0	1 (17)	0	5 (83)
LVOTO	30	3 (10)	0	3 (10)	0	2 (6)	25 (83)
RVOTO	26	1 (4)	1 (4)	0	3 (12)	1 (4)	21 (82)
TGA	29	3 (10)	0	3 (10)	1 (3)	0	25 (86)
TOF	43	10 (23)	4 (9)	6 (14)	1 (2)	2 (5)	30 (70)
DORV	13	2 (15)	0	2 (15)	1 (8)	2 (15)	8 (63)
AVSD	63	22 (35)	7 (11)	15 (24)	6 (10)	3 (5)	32 (52)
CHB	7	0	0	0	2 (29)	0	5 (71)
TAPVD	1	0	0	0	0	1 (100)	0
DILV	1	0	0	0	0	0	1 (100)
Truncus	5	1 (20)	0	1 (20)	0	2 (40)	2 (40)
RAI/LAI	4	0	0	0	0	3 (75)	1 (25)
ccTGA	2	0	0	0	0	0	2 (100)
Total	269	55 (20)	20 (7)	35 (13)	22 (8)	26 (10)	166 (63)

Abbreviations: AVSD, atrioventricular septal defect; ccTGA, congenitally corrected transposition of the great arteries; CHB, congenital heart block; CHD, congenital heart disease; DILV, double inlet left ventricle, DORV, double outlet right ventricle; HLHD, hypoplastic left heart disease; HRHD, hypoplastic right heart disease; IUD, intrauterine demise; LVOTO, left ventricular outflow tract obstruction (mitral atresia, mitral stenosis, coarctation of aorta, interrupted arch, Shone complex), NND, neonatal death; RAI/LAI, right arterial isomerism/left arterial isomerism; RVOTO, right ventricular outflow tract obstruction (tricuspid atresia, pulmonary artery atresia/stenosis/Ebstein anomaly); TAPVD, total anomalous pulmonary venous drainage; TGA, transposition of the great arteries; TOF, Tetralogy of Fallot; Truncus, truncus arteriosus.

A comparison of the proportion of pregnancies that underwent termination or were managed through the planned perinatal palliation prior to and following legislative change in Ireland is presented in Table 3. The overall proportion of pregnancies that underwent TOPFA was 21% (16 of 76) prior to legislative change and 20% (39 of 193) after this timepoint. Prior to introduction of legislation allowing for pregnancy termination in Ireland in circumstances of fatal fetal abnormality, all cases (16 of 16) of major CHD that opted for pregnancy termination traveled to another jurisdiction. Following legislative change, among the 39 TOPFA cases in the study period 2019 to 2023, 51% (20 of 39) of TOPFA cases were managed in Ireland, with the remaining 49% (19 of 39) being performed overseas, as the prenatal diagnosis was not considered to meet criteria for TOPFA under Irish legislation. A notable increase in TOPFA was observed in 2023 (35%, 17 of 49) compared with previous years; however, this did not reach statistical significance (P = 0.158). (Figure 2) For both comparative study periods, the majority of pregnancies that underwent TOPFA had associated genetic or extracardiac structural diagnoses (76%, 42 of 55) (Figure 1).

TABLE 3.

Outcome rates per year for major CHD in 2017–2023 (N = 269).

Year	Major CHD, no.	Total TOPFA, n (%)	TOPFA in Ireland, n (%)	TOPFA outside of Ireland, n (%)	IUD/stillbirth, n (%)	NND (palliation), n (%)	Live birth (surgical plan), n (%)
2017	44	10 (23)	0	10 (23)	3 (7)	4 (9)	27 (61)
2018	32	6 (19)	0	6 (19)	5 (16)	2 (6)	19 (59)
2019	41	6 (15)	2 (5)	4 (10)	2 (5)	7 (17)	26 (63)
2020	45	6 (13)	5 (11)	1 (2)	5 (11)	5 (11)	29 (64)
2021	32	5 (16)	2 (6)	3 (9)	0	3 (9)	24 (75)
2022	26	5 (19)	2 (8)	3 (12)	3 (12)	3 (12)	15 (58)
2023	49	17 (35)	9 (18)	8 (16)	4 (8)	2 (4)	26 (53)
Total	269	55 (20)	20 (7)	35 (13)	22 (8)	26 (10)	166 (62)

Abbreviations: CHD, congenital heart disease; IUD, intrauterine demise; NND, neonatal death; TOPFA, termination of pregnancy for fetal anomaly.

FIGURE 2.

Termination of pregnancy trends 2017–2023. TOPFA, termination of pregnancy for fetal anomaly.

The proportion of women who opted prenatally for palliative care was unchanged across the two time periods (Table 3).

In the case of a prenatal diagnosis of isolated major CHD without associated structural or genetic diagnoses, no statistically significant temporal change was noted for TOPFA rates with respect to the introduction of the Termination of Pregnancy Law (Table 4).

TABLE 4.

Pregnancy outcome for isolated CHD (no associated major structural/genetic diagnoses) (N = 147).

Pregnancy outcome	Years 2017–2018, (N = 46), n (%)	Years 2019–2023 (N = 101), n (%)	P value a
TOPFA in Ireland	0	5 (5.0)	0.325
TOPFA overseas	3 (6.5)	5 (5.0)	0.706
TOPFA total	3 (6.5)	10 (9.9)	0.755
Planned perinatal palliation	3 (6.5)	6 (6.0)	1.000
IUFD	2 (4.4)	4 (4.0)	1.000
Livebirth with surgical plan	38 (83)	81 (80)	0.823

Abbreviations: IUFD, intrauterine fetal demise; TOPFA, termination of pregnancy for fetal anomaly.

^a Fisher exact test.

4. DISCUSSION

This report represents the first presentation of pregnancy termination data for major CHD from the largest fetal medicine center in Ireland. The data indicate that where major CHD is identified during pregnancy, decision‐making with respect to the continuation of the pregnancy with intent for surgical intervention, TOP, or adopting a perinatal palliative care approach is influenced by the identification of additional abnormalities and the severity of diagnosis rather than the geographic availability of a termination service. In situations where an individual case does not fulfill the criteria for TOPFA under the provisions of the Irish Health (Termination of Pregnancy) Act, patients will continue to travel to another country to access TOP if desired.

With improvements in prenatal detection, greater access to comprehensive prenatal genetic testing such as exome sequencing, and advances in neonatal and pediatric cardiology care, prenatal consultation for major CHD has become increasingly complex. ¹ , ¹⁰ , ¹¹ In the setting of a prenatal diagnosis of major CHD, dedicated prenatal care provided by a multidisciplinary team is recommended to allow for an accurate diagnosis although there is no consensus on the recommended frequency of serial fetal echocardiography according to CHD diagnosis. ¹² As pregnancy advances, management plans may change, reflecting a dynamic fetal condition and changes in parental views. Comprehensive guidelines in Ireland ¹³ and internationally ¹⁴ , ¹⁵ on palliative care exist to guide prenatal teams in providing relevant information following the diagnosis of a life‐limiting or fatal condition. Irish guidelines outline recommended care pathways for ‘life‐limiting complex cardiac defects’ developed in collaboration with the pediatric cardiology team. ¹³ Consultations must include a detailed discussion relating to prognosis, potential for additional risks to the fetus or the mother, and options for surgical correction or surgical palliation, palliative care, or pregnancy termination options. ¹³ , ¹⁴ , ¹⁵ In common with other published studies, ¹⁶ , ¹⁷ this cohort demonstrated higher rates of pregnancy termination in the setting of more severe CHD diagnosis, such as single‐ventricle pathology, or when associated genetic and extracardiac diagnoses were identified. ³ , ¹⁶ CHD is reported to be associated with genetic conditions in 30%–40% of cases, and increased prenatal detection of CHD has prompted increasingly comprehensive genetic testing. ¹ , ⁵ , ¹¹ An 8% incidence of IUFD was observed in this cohort, consistent with the low risk of spontaneous fetal death reported in other observational studies.

A Danish study reported a 39% reduction in liveborn cases of CHD over a 7‐year period, attributed to prenatal detection rates and the availability of TOPFA. ³ Another study in the Czech Republic reported that improvements in the prenatal detection of major CHD were accompanied by a parallel increase in TOPFA. ¹⁸ By comparison, the prenatal detection rate in our center is 93% for critical CHD, ¹⁷ with no significant increase in the rate of TOP for major CHD across a 7‐year period notable for landmark legislative change.

The study from the Czech Republic cited liberal TOP laws as the reason for one of the highest TOP rates in Europe for CHD, at 49% over 16 years in one tertiary care center. ¹⁸ In contrast, a recent US study from Utah in 2023 reported an overall 4% rate of TOP for major CHD in a jurisdiction where termination laws have strict criteria. ¹ The study reported that TOP in the context of major CHD was most commonly performed for HLHD at 27%, followed by AVSD (21% of pregnancy terminations in the setting of CHD).

Palliative care plans have been used in the postnatal setting for many years in the United States but are now being considered more recently by cardiac teams prenatally. ¹⁹ , ²⁰ , ²¹ In a study in the United States, approximately one‐third of cases of single‐ventricle pathology were offered a palliative care consultation in the postnatal period. ¹⁸ Families expecting a baby with a lethal condition or one requiring multiple surgeries with a poor prognosis face potentially lengthy hospital stays, making joint decision‐making both challenging and stressful. This highlights the potential benefit of palliative care in parallel planning, where plans for sustaining life are made concurrently with preparations for a shortened life, helping to balance the inherent uncertainty. In countries with recently restricted access to TOP, recent studies are focusing on prenatal palliative care plans for CHD. ²⁰ , ²¹ Access to palliative care, when an infant's physical, emotional, and spiritual needs are appropriately addressed in their short life, is recognized by the World Health Organization as an explicit human right. ¹⁸ Furthermore, the holistic care provided can offer comfort to both the infant and their family. ²⁰ Teams ensure that parents are given clear and reliable information regarding the birth, the uncertainty of life duration, and the decisions on whether it is possible for parents to bring a child home. ²² Our study suggests that palliative care remains an option that is considered during the prenatal course of pregnancy by 10% of patients with a pregnancy complicated by a lethal fetal cardiac diagnosis, which represents approximately one‐third of major CHD cases prenatally diagnosed in Ireland. This figure may also reflect societal, traditional, or ethical views held in Ireland. Similarly, a study in France reported a palliative care plan in 10% of continuing pregnancies that had a prenatally diagnosed life‐limiting condition. ²³

Limitations of this study include that fetal autopsy was not universally performed in termination cases to confirm the prenatal diagnosis. However, all patients who underwent pregnancy termination for major CHD underwent ultrasound examination by at least two maternal‐fetal medicine specialists, and all imaging was reviewed by two separate multidisciplinary fora: one joint pediatric cardiothoracic‐cardiology forum and a multidisciplinary fetal medicine‐neonatology forum. In our opinion, therefore, it would be unlikely that the prenatal diagnosis of severe CHD would have been incorrect in a significant number of cases. The 2‐year time period examined in this tertiary center before enactment of the Termination of Pregnancy Law in Ireland was shorter than the post‐enactment timeframe, owing to suboptimal reliability of data acquisition prior to 2017.

The provision of TOPFA in Ireland is sufficiently recent to justify ongoing close monitoring of this complex area of perinatology.

AUTHOR CONTRIBUTIONS

Conception/design of the work: Fiona Cody, Fionnuala M Breathnach, Nollaig Kelleher. Data collection: Nollaig Kelleher, Fiona Cody, Fionnuala M Breathnach, Sirisha Bellamkonda. Data analysis and interpretation: Fiona Cody, Fionnuala M Breathnach, Zara Molphy, Patrick Dicker. Drafting the article: Fiona Cody. Critical revision and expert review of the article: Fionnuala M Breathnach, Patrick Dicker, Fiona Mc Elligott, Fergal Malone. Final approval of the version to be published: All authors read and approved the final manuscript.

FUNDING INFORMATION

None.

CONFLICT OF INTEREST STATEMENT

The authors declare that they have no conflict of interests.

CONSENT

Individual patient consent was not necessary as data was de‐identified prior to being collated and stored. This was a retrospective analysis which did not identify any individual patients.

Cody F, Kelleher N, Molphy Z, et al. Impact of pregnancy termination law reforms in Ireland on pregnancy termination rates in the setting of fetal congenital heart disease: A trend analysis. Int J Gynecol Obstet. 2025;169:623‐629. doi: 10.1002/ijgo.16021

DATA AVAILABILITY STATEMENT

Research data are not shared.