3.1 Study participants
The final sample included 20 participants with an average age 30.1-41.8+/- 5.85 [21-43] years. The research team confirmed participants all were modified WHO class II-IV for pregnancy morbidity and mortality with their cardiologist. Specific diagnoses as identified by the participants are included in Table 1. Nine of the participants reported complex CHD, and 10 reported CHD of moderate severity as per the American College of Cardiology/AHA anatomic classifications for CHD. Given the anonymous nature of the interviews, we are unable to comment on the physiologic grade of participants’ CHD . One participant did not know her diagnosis. Nine participants had previously been pregnant, and 18 were sexually active. Table 2 summarizes the demographic information of the participants.
Several central themes regarding SRH and CHD emerged in the interviews. These are discussed below and highlighted by participant quotes.
3.2.1. Theme 1: Women saw CHD as impacting their reproductive health goals and decisions.
The majority of participants expressed a belief that having CHD has impacted their reproductive health goals and decisions. They viewed CHD as a major factor in considering whether and how to have children. This applied both to participants who had engaged in pre-pregnancy counseling with their cardiology provider and to those who had not. One 23-year-old participant with tetralogy of Fallot noted, “Well, see, I’ve also always grown up knowing that there was potential that I couldn’t [safely get pregnant], I guess. I don’t even know if I should’ve assumed that.”
Many participants considered themselves to be at higher risk for complications with pregnancy and delivery. Most of the participants had considered adoption, fostering, or use of a surrogate. “I still would like kids in some way,” stated a 34-year-old woman with pulmonary atresia, ventricular septal defect and dextrocardia, “Even though I can’t necessarily have them on my own, there’s other options out there, which is good.”
Several participants shared concerns that their children would be at increased risk of inheriting CHD. A 35-year-old woman with coarctation of the aorta stated, "I don’t know what or if I would pass anything on to them and I wouldn’t wanna put them in a position where they would maybe have a life-threatening illness.”
Additionally, participants were concerned about their ability to parent well. One 34-year-old participant with pulmonary atresia and atrial septal defect stated: "I do have concerns...in the future am I gonna be able to keep up with [my kids]... Am I gonna be able to support them with anything with school or help with field trips and stuff...Normally, you put your kids first." About half of the participants expressed concern that they would not be able to do important things with their children; further, several stated they feared being a burden to their children. One 33-year-old participant with aortic stenosis expressed, “It scares me because I don’t want any child I would have to worry about me…I don’t want them to have to worry about the health issue[s] of their mother.”
3.2.2. Theme 2: Women with CHD perceived a lack of safe contraceptive methods for their condition.
While several patients had a good understanding of which contraception methods were safe and available to them, a large proportion of this high-risk population did not, and incorrectly believed they had limited or no options for birth control. Half of all participants stated that they believed there were limitations on safe contraceptive methods for their specific CHD condition. For this reason, four women who were sexually active did not use contraception or used only barrier methods. A 33-year-old woman with valvular disease noted, “[My gynecologist] said, ‘Oh wait—you’re a heart patient. You probably shouldn’t be taking [the pill].’ I relied on condoms from that point on, because I didn’t feel that that was safe for me.” A 22-year-old woman with hypoplastic left heart now post-heart transplant reported, "I'm not sure if I'm allowed to take birth control because of my heart condition. Yeah, it's complicated.”
Six of the twenty participants reported using long-acting reversible contraception methods (LARCs), and one had a salpingectomy.
3.3.3. Theme 3: Women with CHD desire tailored, disease-specific SRH information.
As participants’ reproductive health concerns were impacted significantly by the presence of CHD, most participants expressed a desire for SRH information that was specific to them. While some participants had good experiences with pre-pregnancy from their cardiologists, others reported inadequate discussion and education. "Going into [pregnancy] I wanted to know my cardiac risks...I wanted to know what effect pregnancy was gonna have on my heart, what effect my pregnancy was going to have on my repair...what the effect to my heart was going to be during delivery. Those were things that really weren't ever discussed," reported a 35-year-old woman with a bicuspid aortic valve and coarctation of the aorta.
Several participants reported that they were not given SRH information until they became pregnant. “It was uncertainty and then just feeling passed off, I guess,” stated one participant, “because the next answer was, ‘Oh, we'll refer you to a high-risk pregnancy specialist.’ Well, before I get pregnant, I want to know how I'm going to be affected and where I'm at with my heart health and all of that."
A minority of participants searched online for CHD-specific SRH information as a first step, noting that it is difficult to know what information obtained on the internet is directly applicable to them. One 35-year-old woman with coarctation of the aorta noted, ”I don’t know how much I found specific to me, specific to my [cardiac] repair.” Several participants reported being influenced by misinformation they found online. One 23-year-old woman with a ventricular septal defect and mitral valve insufficiency stated, “I one time saw [on the internet] that each baby you have is doubly at risk to develop your specific condition… I was really afraid for years to ever have another baby, but then I talked to my doctor about this… and she said not to her knowledge. The baby is at an increased risk, about three times more likely than the average baby. Even so, that’s no so great a risk that it should scare me that badly.”
3.3.4. Theme 4: Women with CHD viewed their cardiologist as the primary source for SRH information and prefer provider-initiated reproductive health discussions starting in adolescence.
Almost all participants reported having a primary care provider and most had an obstetrics and gynecology provider. Despite this, almost all participants expressed a preference for their cardiologist to provide SRH information. Participants highlighted that their cardiology provider is the most familiar with their overall health and risks and often knows them best and for the longest duration. “I’ve always included my cardiologist in almost everything I do just because I know that the circulatory system…is so interconnected,” noted a 34-year-old woman with pulmonary atresia and atrial septal defect. Participants also stated that they frequently end up being referred back to their cardiologist by other health care providers for disease-specific information. “See, a lot of doctors always refer me to my cardiologist,” stated a 23-year-old female with Tetralogy of Fallot, “I don’t think I’ve ever had a doctor that has not told me to refer to my cardiologist, because they don’t know.”.
Most participants preferred cardiology providers to initiate discussions about SRH. "Looking back, I wish that he [my cardiologist] had brought up…that I don't have any implications for my heart in terms of family planning. It's something I thought about, and would be nice to know," stated one 34-year-old participant with bicuspid aortic valve and coarctation of the aorta.
The majority of participants felt that these discussions should start in early adolescence, and many felt that their providers had not started SRH discussions early enough. "Even when we were younger…I'd wonder if I could have kids. I was only...11, 12 years old, but I was thinking that could be a big question in my future," noted one 34-year-old participant with pulmonary atresia and an atrial septal defect. To this point, one 34-year-old participant with pulmonary atresia, VSD and dextrocardia recommended, “just keeping the lines of conversation open with the cardiologist even when they’re in pediatric cardiology…just to make sure they know because they really should be responsible about it for their own health, and so they know there’s a good way to go through it.”
A few participants expressed concern that the presence of parents in the room for outpatient visits may deter providers from initiating conversations about SRH. One 21-year-old woman with ventricular noncompaction stated, “[The conversation] was more like a one-way because I didn’t really know what to say because my mother was also right outside of the door. I’m sure she heard the conversation, so I just felt awkward.”
3.3.5. Theme 5: Women with CHD desire coordinated pre-pregnancy and intrapartum care between their cardiologists and women’s health providers, and those who engaged with integrated care had positive experiences.
Among those who had been pregnant, participants had a variety of experiences, both positive and negative, with care during pregnancy and delivery. They unanimously expressed a desire for robust communication and coordination of care between women’s health providers and cardiologists. There was a distinct difference between the participants who received care in a multi-disciplinary center involving coordinated care between women’s health and cardiology providers, and those who had not. One 34-year-old participant with bicuspid aortic valve and coarctation of the aorta stated, "In general it's good to have a whole team to communicate amongst each other when someone who has a heart condition is pregnant. At least when I was pregnant it seemed like there was a communication gap.” The participants acknowledged that providers in each specialty were limited in what they could provide, further necessitating coordinated communication and care. "We always end up getting shoved back to our cardiologist. The cardiologist doesn't understand a lot of the reproduction stuff…Somebody's got to be there for us," expressed another 36-year-old participant with Tetralogy of Fallot.
Women who reported a positive experience with their prenatal and peripartum care emphasized the value of interdisciplinary communication. “Everyone did a really great job with staying on the same page,” stated one 32-year-old participant with Tetralogy of Fallot “[My different health care providers] worked in tandem to make sure that I had the safest delivery possible and I of course was high risk, so all of my information was communicated back and forth, and...I never felt like I fell through the cracks or that any of the information was disoriented.” Additionally, participants who had received pre-pregnancy counseling by a multidisciplinary team that included genetic counseling were thankful for this interaction.