Carefully monitor pregnant women with heart defects

Patrizia Presbitero (© Private)

Patrizia Presbitero is one of Europe’s foremost authorities on heart disease and pregnancy. She has followed hundreds of women with congenital heart defects through pregnancy and childbirth.

“Women with congenital heart defects are definitely more anxious than other pregnant women,” says Patrizia Presbitero. “Not only are they worried about their child, they also have to consider their own heart problems. Their biggest worries tend to arise after giving birth. They ask, ‘Can I handle this? Will I get to see my child grow up?’ Added to that is the fear that the child will have a heart defect too.” Nevertheless, Patrizia strongly urges her patients to have children.

Double the fears

Patrizia believes the medical profession is to blame for many of these women’s worries. She says doctors are not used to dealing with congenital heart defects, and transfer their own worries to the patient. “That’s why GPs are so important,” says Patrizia. “These women have lived with their heart disease all their lives. They are used to the symptoms, evaluate them constantly, and actually have a tendency to minimise them,” she points out.

Ignorance leads to abortions

Patrizia Presbitero works at the Humanitas Institute in Milan, Italy. She frequently sees patients who have been pregnant once or twice but were convinced by their doctor to have an abortion. “This is an unnecessary burden on the women, and can be attributed to ignorance on the part of the doctors,” says Patrizia. Another common piece of misinformation is that these women should deliver before their pregnancy has run its full term. “If, for example, a women has a mechanical valve, the doctor expects her to deliver after seven months. But that’s completely wrong. If everything is OK, most such pregnancies can, and should, go full term. We should prevent premature children whenever we can,” says the cardiologist.

Pregnancy and childbirth in women with congenital heart defects must be followed up at a hospital with an interdisciplinary GUCH team. “Unfortunately, many countries are poorly organised in this regard, particularly those in southern and eastern Europe,” says Patrizia.

Ideal: Young and planned

The vast majority of women with congenital heart defects can have children, whether their defect is a major or minor one, and regardless of whether they have undergone many operations, one, or none. “This is a direct result of surgical advances. But these hearts do bear scars, and surgeries do not fix everything. That’s why we have to watch them carefully,” says Patrizia. This means monitoring risk factors and measuring physical performance capacity – because giving birth is hard work. “There are periods in which double the normal amount of blood is circulating. Ideally, all women should be examined thoroughly before they become pregnant, but things don’t work that way in practice. We cardiologists should encourage women with congenital heart defects to get pregnant while they are young. That reduces a host of risk factors, such as high blood pressure and cholesterol, and lowers the danger of arrhythmia.”

Inheritability and foetal damage

Certain heart defects increase the risk that the foetus will be damaged or will fail to survive to birth. Examples of such defects include cyanotic states involving low oxygen supply, which can result in the foetus getting too little blood and oxygen. The risk of losing the child is reduced substantially if the hospital follows up properly.
“Most of my patients are also concerned about inheritability. We offer ECGs, and can provide good answers. After six months we have a good understanding of any foetal heart defects that are present. If the child does have a heart defect, it will rarely be the same one the mother has,” says Patrizia. She also stresses that inheritability has not been shown for some types of heart defects, although their incidence is higher in certain families.


The risk of complications during pregnancy is not necessarily proportional to the degree of severity of the woman’s heart defect. “You could say that the more complicated the name of the defect one has, the greater the danger of complications. But experience shows that heart complications can occur even when the defect is moderate,” says Patrizia. This is attributable to the major changes in blood circulation that occur during pregnancy.

The two diagnoses that probably pose the greatest risk to pregnancy are Pulmonary vascular obstructive disease and Eisenmenger's syndrome. These entail an increased risk of sudden death, particularly during the interval from childbirth to one week after giving birth. Women who have undergone a Fontan operation and those with Marfan’s syndrome are also among those with the highest risk, although such patients are few in number. Pregnant women with Marfan’s syndrome once had a high mortality rate, but major strides have been made in this area as well. Women with very large aortic roots should nevertheless avoid becoming pregnant, according to Patrizia. “Many Marfan patients must undergo surgery after pregnancy, but there are just as many follow-ups among patients who have never been pregnant. Pregnancy thus does not affect the disease,” she says.

Surgery on pregnant women

Mitral stenosis and aortic stenosis are other diagnoses that can pose challenges. Mortality during pregnancy for women with aortic stenosis was once 7%. Today this figure is nearly zero. But 4% of pregnant women with aortic stenosis must undergo surgical treatment during the course of their pregnancy (valvoplasty). Of those with severe cases, 41% must undergo an operation after giving birth. “Interventions are common among patients with stenosis, and we achieve good results,” assures Patrizia. The exception is coronary stenosis. “Here we see mixed results, mainly because the patients come in too late. This emphasises the importance of following up all the way along.”

About Patrizia Presbitero

Dr. Patrizia Presbitero received her medical degree from the University of Torino in 1973, and completed her training as a cardiology specialist in 1976. Dr. Presbitero's long professional career began at Molinette Hospital in Torino. She later served as an assistant physician and researcher at the National Heart Hospital and the Hospital for Sick Children in London, and has taught cardiology at the University of Torino and Giovanni Bosco Hospital in Torino. She has been the head of invasive cardiology at Humanitas since 1997. Dr. Presbitero is an internationally recognised expert in congenital diseases, both surgically treated and not surgically treated, particularly in adult patients. She was the head of the ESC Working Group on Grown-up Congenital Heart Disease from 1994 to 1996. Her professional experience extends to hemodynamics and various types of catheterisation and heart surgery. Dr. Presbitero has published more than 100 scientific papers in important national and international journals.

Author(s): Marit Haugdahl
Last updated: 2009-07-06

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Comments on this article

05.01.2010 | Angelica Rodriguez, Venezuela
Buenas Tardes, soy una mujer de 33 años de edad tengo una hija de cuatro años y medio y desde que di a luz sufro de una miocardiopatia dilatada o periparto, eso me ha afectado mucho porque siento que no puedo llevar una vida normal como cualquier otra, ahorita tengo seis semanas de embarazo, me estoy viendo con un cardiologo en mi pais y me dice que mi corazon no esta tan deteriorado como otros que el ha visto, pero tengo mucho miedo de lo que pueda pasar y estoy pensando en interumpir el embarazo aunque el diga que si puedo yo siento miedo porque si me muero quien va ver de mi hija, es una lastima que estemos tan lejos y no pueda ayudarme
18.03.2010 | Dawn Mosley, Untied States
Thank you so much for this article. My daughter age 22 is pregant and is planning to try and carry her baby to term. She had a modified complete fontan 18 years ago( and since than has done wonderful). This is a scary and exciting time for our family. She is under the care of a wonderful doctor( only after being told by one she should not have this baby). I am very thankful that she got a second opinion before making a final choice.
25.08.2010 | Paul Jacqueline, Deutschland
Ich lebe seit meiner Geburt mit einem Herzfehler (genannt Ductus/Herzklappenverengung) und bin an diesem als Baby operiert worden bin (von einem Professor Dr. Walter Hoffmann). Muss alle 2 bis 3 Jahre zur Kontrolle um sicher zu sein, dass da nichts ist. Jetzt bin ich in der 38. Schwangerschaftswoche und das Kind muss per Kaiserschnitt geholt werden. Da mein Beckenknochen nicht die breite hat für mein Kind, ist der 2.9.2010 der berechnete Termin für den Kaiserschnitt. Als ich Ihren Bericht gelesen habe über Herzfehler und Schwangerschaften war ich schon sehr beeindruckt darüber, wie Sie das alles sehen und dass Sie uns Frauen eine Chance geben und die Frauen nicht aufgeben. Wenn man bei den meisten Ärzten ankommt und sagt, was für eine Herzkrankheit man hat verstehn sie das nicht direkt auf Anhieb. Obwohl sie Kardiologe von Beruf sind. Aber ich denke, dass Sie so eine Ärztin sind, die den Menschen Mut macht und sie nicht aufgibt. Ich danke Ihnen, dass ich Ihren Bericht lesen durfte - für alle Frauen.

Liebe grüße, Jacqueline Paul
14.02.2012 | Carmen Grech, Malta
My daughter is 31 and has Aortic Stenosis. She had a VSD hole closed when she was 6 months old (open heart surgery). She is 5 weeks pregnant. She was told the aortic stenosis is mild but she will eventually need an operation. How do these patients go with pregnancy and labour. Would she be best to have a Ceasarian.