She was diagnosed prenatally at my 18 week ultrasound. At that time she was diagnosed with a small aortic root and VSDs and she was also diagnosed at the same time with a brain defect which never panned out, but was reported at that time. After we received the diagnosis I had to have level two ultrasounds, and fetal MRIs, echoes, and a lot of testing. Things change day to day, and they encouraged us to wait to see if they were seeing the same things because ultrasounds are a wonderful tool, but it’s really hard to see stuff, and it’s not uncommon for a baby to be diagnosed with heart defects, and then come out with something completely different. We were encouraged to wait two weeks and have all the scanning done again, which we did, and things actually were different in two weeks. The neurological problem was gone in two weeks and it’s never appeared again. Who knows, maybe it was just a weird measurement, or she was lying a funny way. By the time I had her, I probably had 14 ultrasounds, multiple fetal echoes, and multiple MRIs.
– Leslie, mother of Margaret, age 2, VSD
I was having twins. So, fortunately, my OB/GYN sends you to a high risk provider. I was on my first visit to the high risk department, so I was 16 weeks gestation but not even showing. The initial doctor that we had was a little blunt about it. I’m laying on the table and he said something about, “Oh my God, I’m sorry” or “I’m seeing something wrong with the heart,” I forget the exact words. And I said, “What does that mean, what are you talking about, what’s going on?” and he said “Just give me a minute, I’ll explain everything.” I was just shaking immediately. He brought me and my husband inside a room and drew an image of what he was trying to explain to us. To be honest with you, I could barely even think or listen to what he was saying. We were referred to the pediatric cardiology group. Fortunately there was a resource right there that we could see the next day. I don’t think we slept or stopped shaking or praying until the appointment.
– Lindsay, mother of Brian, age 2, Heterotaxy
We first learned that Carson had a heart abnormality when I was 20 weeks pregnant during a routine ultrasound, although the initial diagnosis and what his end diagnosis was definitely not the same. Our initial experience was at our local hospital, and was pretty traumatic. They said it was the worst heart defect they had ever seen, and that he had no chance of survival. Our best case scenario would be that he would be born with severe mental and physical disabilities, and that it was basically inhumane to continue with the pregnancy. We were advised to “go home and grieve,” and that is a quote from them. We were told to come back later and have the pregnancy taken care of, which obviously was not something that we wanted to do. Unfortunately, even when I called to make a follow-up prenatal appointment, the secretary questioned me on why I was making a follow-up appointment. I obviously got another opinion.
Later that week we met with a local pediatric cardiologist, and she advised us to go to Boston. I think it was like 26—27 weeks pregnant. We met with his doctors and they revised Carson’s diagnosis to a double outlet right ventricle, so he is a single ventricle, he has one atrium, and heterotaxy syndrome, which is basically when your internal organs are misplaced. So not all of his organs are affected, but his liver and his spleen are inverted. So his liver and spleen are on the wrong side of his body which—most children with Heterotaxy Syndrome also have heart abnormalities. We were blind-sided with all sorts of craziness.
– Amanda, mother of Carson, age 5, Heterotaxy
While I was pregnant, I had the normal prenatal testing done. Around 20 weeks they found that her heart rate was low and variable. I was monitored for a while on a daily basis and then a weekly basis and the doctors at the time decided that whatever it was, it was stable and they would have to figure out what was going on after she was born. She was born and they did an EKG and told us that it was normal and there was nothing wrong, they didn’t know why she had bradycardia in utero. We had been home for a couple of hours and I got a phone call from a Cardiology Electrophysiology fellow saying, “Your baby was supposed to come here.” Apparently her EKG was actually quite abnormal. Somehow the message had gotten mixed up. We went to Children’s and spent a few days in the hospital there, and at that point we learned that she had long QT.
– Catharine, mother of Willow, age 8, Long QT Syndrome
I was pregnant with twins and we went in for an ultrasound, around 18, 19 weeks, and they had a hard time, especially with twins, finding Alexandra’s heartbeat, because her twin’s was really strong. We ended up having to spend a night in the ER while they were trying to figure it out. That’s when I remember I have the lupus antibody. We were able to find out that Alexandra had what’s called complete heart block, and that’s from people who have the Lupus antibody, there’s a percentage—and it goes up with each pregnancy—that a child can have complete heart block.
– Kate, mother of Alexandra, age 8, Heart Block & Pacemaker
We learned at about 23 weeks. We had gone for our ultrasound and the maternal-fetal doctor couldn’t see all parts of her heart. Because I have a congenital heart defect, they suggested we come back in a few weeks and do the ultrasound with a pediatric cardiologist. Leah was our first born, so it was just my husband and I, and we knew it wasn’t good whenever the doctor left the room and nobody wanted to say anything during the ultrasound. The prognosis we were given was only a 50% chance of survival—we were distraught. We had a hard time getting pregnant for her, and then to finally get pregnant and halfway through that pregnancy be given such a grim prognosis, it was devastating.
– Donna, mother to Leah, age 10, HLHS
I was about four and a half to five months pregnant. It was a routine ultrasound, they couldn’t see all four chambers of the heart. They didn’t think there was any concern, they said, “We’ll do a follow-up ultrasound in about a week.” At that ultrasound a week later, I’m certain they knew right away because I remember hearing the word “hypoplastic” but they didn’t tell us anything. I finally stopped them and said “You need to tell us” and they said, “Your baby definitely has a problem with his heart, try not to worry, some of these problems are easily fixed nowadays.” They said, “You’ll need to go to Boston” and I said “When?” and they said “Right now.” We went to a high-risk doctor and she knew right away what she was looking at. She called a cardiologist from Children’s and that was honestly the only kind and good thing she did for us. She was really abrupt—she didn’t even sit me up on the table before she gave the diagnosis, and I was still laying there with my belly hanging out and goop all over it. She said “Here’s what he has and it will financially devastate you, and be completely devastating to your other child, and you have one week left to terminate.” She said, “Do you have any questions?” I said “Is it a boy or a girl?” and she said, “It’s a boy.” It wasn’t the best day.
– Diane, mother of Jake, age 21, HLHS
Courtney: We went for an ultrasound, I was just spotting a little bit. I had placenta previa, and she said, “Okay, I can see why there was a little bit of spotting, this is a pretty serious condition, but wait, your son has Tetralogy of Fallot.” Boom, just like that. Richard—did you faint during that one?
Richard: I didn’t take it well.
Courtney: We were just like, “What?!” and she said, “Well, this is treatable and now we’ve seen it in utero, so don’t worry about that right now.” I had to go into the hospital immediately even though I had seven year old twins at home. He was born a month after I went in. They were checking his lung capacity—I was having amnio every other day, so that they could pull the fluid and check to see if the lungs had matured yet. They thought I could hemorrhage, but we needed him to be as mature as possible, so it was walking a very fine line- the moment his lungs matured, they delivered in C-section. He weighed close to seven pounds, and he was in perfect condition, didn’t look blue, and they rushed him to Children’s with Richard behind him, and they checked him upside-down, inside-out, said “He’s good to go” brought him back to me. I went home four days later. He had his surgery six months after that.
– Courtney and Richard, parents of David, age 23, TOF