I think the one other complicating piece for us was that when I was pregnant, we had that scan and she had an abnormal measurement, so they thought it was one of the trisomy’s, or Down syndrome. They basically prepared us to say, “you may want to terminate your pregnancy.” And we just went and got more information. We got more scans, we did all the genetic testing, and everything came back fine. But they did the fetal echo and all that stuff because they did say that one of the connections is between that particular number and what could turn out to be heart issues. So when the pediatrician said, “she has a heart murmur,” I felt like the other shoe had dropped. Because truth be told, I think my whole pregnancy we’d been walking on eggshells trying to figure out. And then she was born and she was fine, she was great, and yet a piece of me never completely believed that there wasn’t another shoe to drop.
– Miranda, mother of Serena, age 2, ASD
The word “defect” just sets off a million bells and alarms in your head. My husband hadn’t come with me because I hadn’t even thought to ask him. I thought our appointment was routine. So here I was with my 16 month old, who is giggling and happy as can be, not understanding anything, and me trying to hold it together. I was in shock for about 30 seconds, and then burst into tears, at which point Avery grabbed a tissue that I was holding and wiped my eyes. And I was like “Okay, stop. Pull it together. You know, she may be little, she may not understand everything, but I need to be strong for her. This isn’t about me, and I need to trust the doctors.” And our doctor said, “This is okay, she’ll be fine, she’ll live a healthy life.”
I had about a million questions that I was shooting off because my head was spinning. And then finally said “Can I call you later when I’m with my husband because I know I’m going to have a million questions as this all sinks in and I can’t think of them right now, and I’m not sure I’m absorbing any of it.” And she said “You’re so right, I think you’re probably absorbing about 15% of what I’m saying right now, so yes, absolutely, call me later.”
And we took the night and she told me to go to the Children’s website, and type in “My child has ASD” and I did. I was reading this thing like, “What could happen” and all the stuff and was getting more and more worked up like, “Oh my God, what do you mean this that and the other could happen? What do you mean she has more risk for stroke? What do you mean about any of this stuff? She said it would be fine!” And she really did, she was so comforting, as much as I could even accept comfort at the time. I called her immediately and she called me right back. I think that’s the first time in my life a doctor has called me back so fast. She talked to us for about 45 minutes that first time and calmed us down again.
– Jessica, mother of Avery, age 2, ASD
My husband and I were devastated, I mean it was the worst thing in the world. At that point you know so little, you don’t know anything about any of the stuff that they’re telling you like the medical terms alone. Our immediate instinct was, “Okay, this is over.” We had no idea that there was any possibility of fixing anything. We sat in my obstetrician’s office expecting her to come in talking about termination and obviously that didn’t happen. I guess when you get a diagnosis that is treatable from their point of view, you’re first recommended to a genetic counselor. We had to meet with geneticists, cardiologists, neurologists—our doctor coordinated everything and very up front she said, “You have until this day to terminate” and she said “It’s an option, but we do not believe, in your daughter’s case, that that is your only option.”
– Leslie, mother of Margaret, age 2, VSD
I introverted myself, which is completely the opposite of what I am. I was thinking, “this is God’s will and there no explanation as to how to deal with this, why this was happening, so it has to be for the greater good. It’ll be okay, it’ll be what it is, it’s God’s will.” Day to day life was thinking about it, but knowing it would have to be okay. Doing whatever I could mentally to make myself feel better, just keeping positive. But I never really dwelled on it or thought, “Poor me.” It was almost kind of, “We’re going to Boston and we’ll let them take care of it.” So, at the beginning it was rough, but as time went on it got better. It wasn’t an altered way of life, I was just blessed to be pregnant. My husband works in healthcare so I think he’s more realistic, that it’s not all going to be peaches and cream, but we just stayed positive, knowing that we were doing everything that we can at the end of the day.
– Lindsay, mother of Brian, age 2, Heterotaxy
Once they did the echo, the echocardiologist came to talk to us, explained what defect he had, and told us it was basically a miracle that he had survived two days on his own, and that he needed emergency surgery. Zach was rushed to another hospital that did surgery, because the one that they were born at didn’t have a heart program. As parents, we were still in shock we had twins, we were in shock over the news of Zach, and then we had to make an immediate decision about where to send him, without knowing anything about anything in the heart world. We had to pick between two hospitals. It was terrifying—unreal. We had to make a decision without having any information, and we are big information gatherers and we like to make informed decisions, so it’s really scary.
– Alice, mother of Zach, age 3, Single Ventricle
It was really crazy. It was absolutely crazy. I have two other children who were one and three at the time, and we were blind-sided. We had no family history of medical problems, I was young when I had Carson, so it’s not like I was high risk, my husband and I are both very healthy, we have two healthy kids. Like, how could this happen? I think you go back, you start questioning everything. Like, did I do something wrong? What is going on? We spent the first two days crying, literally. For me, it was important to go through the process without feeling judged or weak or anything like that. I allowed myself to go through the crying—you get angry and you cry about it constantly, and then you get mad about it, “Why did this happen to me?”
We allowed ourselves to be upset and we went through all of the emotions and had all of the conversations that you don’t want to have about your child and what’s the right decision and what should we be doing, how do we deal with this, and if he’s going to make it. All of those things we kind of got out of the way in the beginning, which was good. It kind of allowed us to be upset and get it all out so that we could move forward a little bit with, “Okay, now we’re donewith that stage, now let’s move on.” Like, what’s next? What are we going to do? How is this going to work? We need to get the best doctors, we need to get the best team, we need to research, we need to do all of these things. It was a good thing for us to have that time to just be a couple and be upset and be sad, and for lack of a better term, grieve the idea that we weren’t going to have the baby that we thought we were going to have, that our whole life was going to change, and that things were going to get really hard.
– Amanda, Mother of Carson, age 5, Heterotaxy
I remember sitting on the little table after the ultrasound and you kind of know when the first technician is there to do the ultrasound, and then she brings in another one, that things are abnormal. Then two doctors come in and the red flags are totally going up and they gave me these diagnoses and even though I didn’t know—as a nurse, I was familiar with a VSD and an ASD—a little bit knew what pulmonary stenosis was, had no idea what the other two diagnoses were. I just started crying. Because, as a mother, you don’t ever anticipate your unborn child having anything wrong, let alone these drastic things that are potentially life threatening, not knowing what it is.
They tried to explain it, but you’re just hit at that point with so many overwhelming feelings and fears and the unknown, and then when they rush you down to the genetics counselor person who’s then encouraging you to abort this pregnancy, it’s a whirlwind of emotions. I had initially decided right off the bat that we’re not terminating this pregnancy. I spoke for my husband since he wasn’t there, that whatever our daughter had, she was our daughter, whether she was born or not, we were going forward with the pregnancy, carrying it to term, and we felt at that point, and even talking with him when I got home, if she lived a day, an hour, a year, an entire life span, it wasn’t going to make a difference. That she was brought into our lives for a reason and we were going to handle whatever was going on, whatever God gave us, this is what’s in the works for her.
– Roxanne, mother of Amelia, age 7, Dextrocardia
Because I had the C-section, I couldn’t go to the regional hospital with my son so my husband went. I remember at 5 o’clock in the morning, getting a phone call from the other hospital giving me the diagnosis, and I’ll never forget, because he told me about HLHS, and what a congenital defect was, but he also said there was a high mortality rate. Needless to say, it was very shocking. He also gave what the options were, compassionate care, everything, but right away, we knew we were going to do whatever we could to give him a fighting chance. But it was really hard, because we didn’t know where to go, and all these decisions had to be made so quickly.
– Abigail, mother of Johnny, age 9, HLHS
It’s shocking, obviously quite eye opening. You don’t expect this, you expect to have a normal kid like everybody else does, and just raise them and that’s it. But that first day was like a week of testing and finding out everything and meeting doctors and having doctors explain to things us, and doctors looking at us and seeing how worried you are. I always say they’re the greatest group of people I wish I’d never met. I remember the doctor seeing us worried and he brings us to the room and he gets this three dimensional heart type-of-thing, and he explains to us Tetralogy of Fallot, and pulmonary atresia, and then you ask the questions that you’re scared to death to ask, “Well, what’s the prognosis?” and I remember him saying “Married with children.” But that was just the first week. And then there was a big discussion between whether they were not going to operate on him then, the first week. And our surgeon, he thought the way Austin was set up now would be fine for a while, and he said, “two months down the road I’m going to want to see him bigger. It’s always better to operate when they’re a bigger kid.”
– Scott, father of Austin, age 10, TOF
We were devastated, and everyone else, or almost everyone else in my family had been diagnosed later in life, either as a teenager or in their twenties, so to find out that our brand new three day old daughter already had it—it was a kick in the gut. I replay the phone call in my head all the time and I remember, word for word what the doctor said because it’s just burned into my mind. It was hard.
– Dana, mother of Raegan, age 11, Cardiomyopathy with a Pacemaker
It’s hard to remember, we were so panicky. My husband was a real huge mess. I kind of felt like it would be okay and vacillating between, “It’ll be okay, I’ve been through it” and “Oh my God, everything is ruined” and just shock and disbelief. She was kind of stoic the whole way through.
– Amy, mother of Rebecca, age 19, ARVD
Melanie: The way he told James—it was devastating to the kid. It was basically, “He has a congenital heart defect that could kill him at any time, and the only fix is surgery.” Of course, I’m thinking, “Okay, they do so much now less invasive, that maybe that’s the way,” and it’s just the way he explained it. It sounded like the end of the world.
Walter: He told him it in 30 seconds. He said “You can’t play competitive sports anymore for the rest of your life.” And when we got done, he was in the car—the whole car was shaking because he was crying, rocking back and forth with his hands on his head.
Melanie: We were about an hour away from home, and there was basically no conversation between any of us on the way home. Everybody was in total shock. And then we- we’re both former military, so we jumped into, “Okay I have to plan this, and fix whatever we’re going to do and make things happen.” Less than two days later I talked to a good friend, a pediatrician, and immediately made our decision that at least we wanted a consult at Children’s.
– Melanie and Walter, parents of James, age 20, Anomalous Coronary Artery
I understood that there was a very severe defect, they drew us pictures, the cardiologist drew us pictures and helped us understand as best we could. My very layman’s understanding was he had half a heart, that it would take several surgeries to give him a chance of surviving, and that his odds of survival were really pretty low. She gave us about 50-50 odds of surviving even the first surgery, which is devastating. So, my thoughts at the time were that our world was ending. When that doctor said we should terminate, I remember looking at her and saying, “You know, we just spent all day looking at this baby on ultrasound, and he’s a child. He’s ours.” Because she was also asking us to choose one of our children over the other one—the older one over this one, and I can’t do that. I just remember being very angry at her, devastated by the diagnosis, and scared to death. I left there feeling like the baby didn’t have much chance at all of surviving. She also said if he does survive, he’ll have very little quality of life, which was sometimes worse than the thought of him not making it. I was more worried about having a child who was so severely compromised that he didn’t enjoy life, that would have just been terrible. It was just a long, overwhelming day.
– Diane, mother of Jake, age 21, HLHS
The first physician we saw told us to fly to another city to have that late term abortion. She said “That would be the best option, and if you don’t and this child struggles, it will not have a quality of life, it will ruin the life of your two year old, it will probably push your marriage to divorce.”
So that was all in the first 20 minutes, that’s what we heard after the diagnosis. She mentioned that at Children’s, this doctor was doing some experimental surgeries. A three-stage surgery, the chances of success are extremely low, in the single digits percentage-wise, although if we wanted to talk to the doctor she’d be happy to call. The cardiologist met us and said the surgeon is having marginal success with this three stage fix and we needed to go home and decide if we wanted to terminate the pregnancy or if we wanted to take a swing at it, if you will, and see if we could get Jake through with everything considered.
We talked to our family, our extended family, and we talked to our priest, and we talked to each other. We didn’t let Matthew know, because he was two. But we very quickly knew that the termination part wasn’t an option. We’re a Catholic family, but it was more than that. It was—we had spent pretty much an entire day on that May 5th day looking at ultrasounds of hands and feet and noses, and what looked to us to be a perfectly formed baby. We didn’t want to know the gender of the baby initially, but we did ask and they said he’s a boy. So now we had seen his little feet and his little hands and his little nose and knew that he was a little boy and there was just no chance that we were going to not make an attempt to help this guy out. So that was the first day or so, it was terrible, quite frankly.
– Bill, father of Jake, age 21, HLHS
They were also very big on letting me know that this is not something that I did. His midline development stalled, it happens in the first eight weeks of pregnancy or something. It was nothing that I did or didn’t do that caused this, and it’s not really a genetic issue, and it just happens and they don’t know why. And that’s what they would tell me when I was laying in bed with the placenta previa. The doctor would come and talk to me about that. It’s hard. I felt like I must have done something. Exercising in the pool, Richard up in Boston, the water was really cold, we were renting a house up there, and I thought maybe the water was too cold in the pool and I did something wrong.
– Courtney, mother of David, age 23, TOF