It was high risk from there on out, but that was going to be the situation no matter what with twins. The only thing that was additional was pediatric cardiology and that was fetal echoes. I made my husband come with me to the first several and just shook the whole time, just nervous about what the doctor would say after each echo, but it got much better. Time, I feel like, heals a lot of things.

As we got comfortable with just understanding what generally was going on, that helped. Our nerves, and just kind of, “okay we’ve got to do this and we’ll get through it.” And it was actually the first appointment with our pediatric cardiologist where he explained what was going on with his heart and the commonality of it and how it’s much more common than you think. He talked us through everything said, “What’s going to happen is he’ll need surgery within the first couple of days of life, more than likely, and it’s a three part surgery and they do them here, but my suggestion for y’all is we send a lot of patients to Boston, Texas, and Alabama.” He listed a few other places. And I’m very trusting, if he said to go to Boston, that’s what we were going to do. He said, “You have the means and there’s a way, I would take care of everything up there.” And so, I was literally 16 weeks pregnant, and we were totally gung-ho about going to Boston. At our following appointment we told the doctor and he started getting the ball rolling, sending everything up there, he’d obviously dealt with them before and knew who to contact.

From there it was just kind of one day at a time and, doing everything we had to do to just get to that point. I wrote this all down, but it was almost 30 weeks and from the formation and growth of his heart they were able to see that it “wasn’t as bad” as originally thought as far as the diagnosis. You know it was very sad and devastating and confusing, scary, and of course, guilt and fear of the unknown. As the days went on, more of an understanding and having an unbelievable doctor—each appointment was better and you know it just got better and better.

 – Lindsay, mother of Brian, age 2, Heterotaxy


I had a great pregnancy—I felt great. Despite what they said on paper, Carson was growing and thriving and even when we’d go listen to the heart beat, it sounded perfect. Like, for a kid that’s so sick on paper, why is everything going so perfect? I did my normal routine appointments until the end. Because it was technically high-risk, I would go in every week to do stress tests, for the last four or five weeks, just to make sure that he was still doing good. But they explained that until he was born and the cord was cut, my body made up for anything that he lacked, so he was fine.

So you have that weird thing at the end of a pregnancy when you can’t wait to have your baby and it was kind of the opposite for me, I wanted to keep him in as long as possible. I think I set myself up mentally, kind of prepared myself that there would be such a large possibility that he wouldn’t live, that I really just enjoyed him while we had him, and even though he wasn’t in our arms, he was in my body, and every time he moved, we enjoyed the moment, and we just tried to really take it in, because we felt like this could be the only time we have with him, so let’s not waste it. Let’s enjoy what we can get, and what happens later happens later, but for now, this is what we have, and so let’s not miss this moment, you know?

Preparing for a baby that you know might not come home is very challenging. I wanted to do all of the motherly nesting things, and set up the crib and get stuff ready, but at the same time, you can’t help but to think, like, “What if we don’t take him home?” Fortunately, my older sister and I had a very brief conversation about if that had happened and in our own sisterly way just gave each other the look. My sister said, “If things don’t work out like you want, I’m going to come to your house and I will kind of pack things up if that’s what you want me to do.” And I said, “Yes,” and that’s pretty much all we talked about it. Because that’s a hard thing, I would assume, coming home without your child and then seeing everything set up for them and they’re not there. I knew she would take care of that and that I didn’t have to think about it. I did set up the crib, I did get stuff ready. Because I have other children, I had pretty much everything I needed, so there was no baby shower involved or shopping involved. But I think I tried to enjoy it as much as I could.

Mothering my other two children, they’re small, they don’t really understand, and how much do you tell them? How much do you not tell them? Being excited and hopeful, but then at the same time being realistic and protecting your heart a little bit, and knowing that I can be as hopeful as I want, but the reality is, this child has a very small chance of living and a very small chance that he’ll come home, and I need to not be blind-sided. I’m sure that is the worst thing a parent can ever do, is lose their child. It was a weird, emotional nine months for sure, but we got through it. And I think honestly I think we got through it in a very graceful way.

 – Amanda, Mother of Carson, age 5, Heterotaxy


We had already talked about names and decided her middle name. We had hope because we were able to get answers and information pretty quickly. It was within a week that we were already with her doctor now, and then we were able to see with the echoes, and be continually reassured that she was thriving in the womb. As a parent it’s just really nice to feel like there’s a team of people that were like, “We’re going to take care of you.” And I had a 15 month old child, so it wasn’t like we had a lot of time to think.

We had my OB and Dr. Alexander kind of create what they wanted to do as the care for Alexandra, and they had to make sure to see what we needed to do about Alexandra’s twin, Susie—if she was going to develop heart block. So I went in every week to have Echoes, and we met with Dr. Alexander. All the rest of their development was fine, it was really actually fun because we would go in for the echoes and Alexandra would be kicking her sister and like doing flips in my belly, and Susie was just like, sitting there like a bump on a log, like, the largest child, and so it was really funny how the child that had the heart problem was the active one. So that was another way of God just kind of reassuring us that everything was going to be okay.

 – Kate, mother of Alexandra, age 8, Heart Block & Pacemaker


I can laugh now because it’s 20 years ago, but I think I was one step shy of crazy. I was definitely depressed. I would say the only thing that got me out of bed in the morning was having another child to get me up, which was a gift. We had a couple more ultrasound scans. When I was maybe 32 weeks pregnant they also diagnosed him with aortic atresia, and that was further reducing odds of surviving the surgery, and that was really devastating. We toured the ICU which was really hard, and we met with doctors. The rest of the pregnancy we sort of got through the days as best we could. I didn’t really know what to plan for, so we didn’t plan anything. We just tried as best we could to get through a day at a time, but that was really hard to do.

 – Diane, mother of Jake, age 21, HLHS