A kid can present how they need to have their next surgical procedure in a variety of different ways, from really drastic, the kid turned blue, to what happened with us which was just she wasn’t hitting her growth curve. She was just declining very, very slowly. They were looking at her height and weight and all of a sudden she just dropped off her average. They said, “You know, this is an indication that we need to get in there a second time and do what we need to do.”
From the time that we brought her home after she was born to that second surgery was very different than what our life is now. That period of time was a big waiting game, we were always waiting for the notification of that next surgery. There were frequent doctor’s appointments, we were there every three months. She was having more sedated procedures and then finally we got that decision for her to have her second surgery. We brought her home from that and our lives sort of reverted to normal. They were like, “Alright, now she’s fixed.” And that has created a very different feeling because we’re not sitting and waiting for this call that she’s going to have another surgical procedure. She’s just a normal kid. We were extremely, extraordinarily fortunate. She did great for both of her procedures, the doctors were able to fix everything, she was just lucky, we were lucky.
– Leslie, mother of Margaret, age 2, VSD
Allen: The waiting is excruciating when you know the weight of what’s happening with the surgeon in the operating room. I was appreciative of the people who come out and give you updates “Okay, she’s on bypass,” “She’s off bypass,” “She’s all stitched up,” “The doctor’s going to come see you in ten minutes.” Those frequent updates— I could see it going either way for people. For us it was good. We like information, so it made us feel good that we knew what was going on. But sitting there was strange in a lot of ways because there’s all these other families in the same area and you know they’re going through exactly what you’re going through. It could be for a completely different surgery. Amongst all the other families who were having surgeries, there’s a little bit of comradery in that, and there’s also a little bit of weirdness in that everybody’s wondering what they’re in for, it was just a very strange experience. But how it’s handled at the hospital I think is really good and helpful from an information standpoint.
Miranda: You’re exactly right. I think they did a great job of preparing us for how she might look in the ICU. We walked in and both of our reaction was like, “That’s my girl. Fine, she looks a little different, she’s got some stuff sticking out of her,” but she looked great compared to what they prepared us for, so that was actually kind of a good feeling.
In terms of advice for other parents, we sent her away with a blanket and a stuffed animal, so when she left us she was carrying that blanket and that stuffed animal. And to the credit of the hospital, when we saw her, she had that blanket on top of her, and that stuffed animal. And in my mind, I could pretend that she had the comfort of them the whole time, even though I know she didn’t. But that was so helpful to me to just have those visual comforts so that she had things from home with her the entire time. I just wanted her to be comfortable, and I loved seeing her and having that with her and it just made me feel really good.
– Miranda and Allen, parents of Serena, age 2, ASD
The second procedure was to fix her VSDs, which did not get fixed during the first surgery, and to remove the pulmonary artery band, which she had had put on when she was just born. Bringing her in for the second procedure was heartbreaking. It’s much easier to hand over your two day old infant than it is to hand over your 16 month old. At two days you don’t know the baby—I mean you love her obviously, but you know she doesn’t talk, she doesn’t call you mommy, she doesn’t know to be scared, so handing her over at 16 months was immensely more difficult than the first one.
During her surgery it was pretty nerve-wracking, but the hospital does a really good job of keeping you up to date and calling you for the big benchmarks during the surgery. It was fall so it was nice out. We sat outside—I could not be in that waiting room, that would have driven me crazy, but people do sit there all day. I mean we just walked around, we tried to lay in the sun and just relax and just wait until we could see her.
We were both pretty relieved at how good she looked when she came out. Kids can look pretty bad when they come out, they can be swollen, they turn all different colors and they puff up a lot. She looked pretty good, all things considered. It’s hard having a tube down her throat, and tubes all over and IVs and wires, but again the hospital does a really good job of kind of keeping them all wrapped up so you don’t see too much if you don’t want to.
– Leslie, mother of Margaret, age 2, VSD
After going through what you go through, coming to Boston was kind of like going home. At that surgery, my youngest sister flew out there with me, and my mom, dad and siblings came, and Brian’s twin, Danny. We got there and they were impressed to see how he’d developed and the way he looked. After all the preliminary stuff, they did a cath, which is standard to go in there and check it out, and then they also put coils in. That involves lateral veins, just to help with the oxygen flow and prepare for what they need to do in surgery. That went fine, he just did not handle it well. I slept in the room with him, I stayed with him those nights in the hospital, he was just totally uncomfortable. And they do stuff, his oxygen kind of drops a little, everything is in preparation for what they’re going to do for the next surgery. He was just not happy.
I was just assuming that everything was going to go okay. Everything was looking great in him, and the way his body was handling whatever they did to him. Surgery took several hours, but I was not at all nervous, it was very strange. I was kind of like, “We’ve already been through everything. There’s no reason to think anything bad.” The first time going through all of this I was just a basket case for these nurses—they come and give you reports on the surgery and I remember initially they walk towards you from the hallway, and their faces are just straight. And you know I got dramatic—I was freaking out on them and so it was funny because they would just dramatically put on the biggest smile as they were walking towards me just to say it was okay.
So this time, one of them remembered me and so she would walk back and forth with the news with a big smile on her face just to joke with me. He stayed in the ICU for a day and a half, and then they brought him to the floor. If the cath wouldn’t have happened, we were admitted and discharged within a week from the surgery. But with the cath and the surgery, we were there for almost two weeks. Of course all the nurses, they know exactly who we are because we were there for two months just a few months before. The looks on their faces of just how amazing he looked and just how he handled everything and the second time around was almost reassuring, that he’s going be alright, we don’t need to worry. So that was better.
I think that was the turning point, the second surgery. I’m waiting any day now to get the call for the third one, which is probably going to be the worst out of all of them because he’ll be two years old, and he will just be pulling everything out and screaming for me and me not able to go anywhere and all that stuff. They just let me know. They’re a year and a half this month, and they said 18 months to two years of age, so any time now!
– Lindsay, mother of Brian, age 2, Heterotaxy
After his first surgery, he was discharged at nine days old. He went home and was in the single ventricle monitoring program. It’s something that more and more hospitals are doing for high risk kids like Zach. There’s a high mortality rate between birth and getting to that Glenn surgery, so there’s a lot of daily monitoring. We had to keep him on a pulse oximeter, we had to do weigh ins and we got a whole binder of things we had to fill out, and then we would call the cardiologist once a week and give them the information we’d been gathering and they would tell us what to do. So that went on for basically four months.
– Alice, mother of Zach, age 3, Single Ventricle
Because he’s a single ventricle, we knew that there were two additional open heart surgeries that needed to happen to address that. They wanted him to get physically as big as he could before the first stage happened, which is the Glenn surgery, so we were kind of just home waiting for the surgery to happen, which makes you even more paranoid. We knew that there would be signs from him that it was getting too hard on him to thrive, I guess, for lack of a better word, and then that would be the time. So we were kind of always watching for these signs, “is his O2 okay? Is he eating okay? Is he acting lethargic? Is he being fussy? What is happening to him?” And whenever those things started going awry, we knew that the timing meant “Okay, he needs surgery again.” So that’s definitely a hard thing, just waiting for surgery to happen, and not knowing when it’s going to be. But he was four and a half months before he had that surgery so we were home for three and a half months in between the two hospital visits. On the last two weeks or week and a half, he was on oxygen at home. He had kind of started to decline and he was really struggling to keep his oxygen up and was very blue, and so he went on home oxygen and we were basically like, in between the time that they could get us in for the surgery. It was about ten days and then he had his Glenn surgery at four and a half months.
Then he had his Fontan at 22 months. He’s unofficially the quickest Fontan recovery at Children’s. That’s what we were told, I don’t know if that’s official or not. He was walking around ICU less than 24 hours after the operating room, eating a grilled cheese sandwich and drinking chocolate milk, it was kind of weird. He did great. He had his Fontan, he was up rearing around, we were out of the ICU 24 hours post-op. We left on day four. And on day three they said “Really, he probably could go home but they really don’t believe it, so we’re just going to keep him one more day just in case. We’ll let you go home tomorrow if everything stays the same,” and he did, he did great, and we left four days later, which is crazy. It’s absolutely crazy.
– Amanda, mother of Carson, age 5, Heterotaxy
Nick: The Fontan was eight hours long. That was rough.
Shana: All of them are rough.
Nick: She took it really well. She was in good spirits right up until they put her out. The night before she and I were up skylarking, and then when her mom got up early that morning she was playing. She was in really great spirits about it, she wasn’t worried, nothing. She actually slept through until the beginning of it.
Jade: Because you were all night snoring! I couldn’t sleep.
Shana: It’s hard when they’re older and as a mother, every time they wheel her out you feel like you’re just empty. I think I gave housekeeping a good little bit of cleaning up to do because every time they wheeled her into the emergency room I threw up—my nerves. You go in, they tell you that she’s in there, and then they put the brain to sleep and then they stop her heart—they tell you all that. I guess it’s a good thing.
Nick: I’d say we were probably informed every half hour. So that was comforting, but still, your nerves are taking over. Especially, you’re in the waiting room, and you see families come in and you see families leave, and you’re still standing there pacing or eating or trying to eat and it’s not working so well, and then Dr. Emani came out and he had a look on his face that was like, “I don’t have much to say to you, I couldn’t have asked for a better. Something as serious as this was so routine” That was a big sigh for us, that was a big.
Shana: Yeah, the Fontan is usually done when you’re two or three, something like that and she didn’t have hers until she was six.
Nick: She was very slow to grow. Fighting with weight.
Shana: We’ve been fighting with weight for a long time, she still doesn’t weigh 40 pounds, but they did the Fontan, she wasn’t quite where they wanted her to be, but they couldn’t hold off any longer.
Nick: I think they were worried about her being so little, some of the medicines they can’t give medicines to take away some of the pain and stuff, and they have a five year old, six year old, trying to keep them still, even just as far as trying to sedate them probably to do it, they were really worried because her body is tiny, about her coping with all the poking and prodding, and at the same time it was like, “Well what’s the pain going to be like?” But she done well and they were extremely happy with her. I mean she was due to be in the ICU for 72 hours, they were wheeling her out of the ICU in less than 24. I think that was the hardest part for me was—
Shana: To actually- I mean we’ve seen her tubed up before, maybe one, two, three times she’s been tubed up, but this one was bigger. I mean when she’s tiny, in a little crib, it’s like “Okay.”
Nick: I think the other times we came here, there was something wrong, we knew they were going in to fix something. This time, yes, we knew something was wrong, but it’s like I carried a perfectly fine looking kid into this hospital, and eight, nine hours later to see her just kind of lifeless, it was extremely, emotionally, very hard.
Shana: We knew a little girl who didn’t make it, so that was sort of freaky because she had the same procedure, and she was probably more severe than Jade was I guess, but we knew that she went in for the Fontan and came home and then three days later she had passed. That sort of was freaking us out. That’s all in the back of your head as well. It really messes you up even more.
– Nick and Shana, parents of Jade, age 6, Dextrocardia
She was seven and a half months old. It was a whirlwind of emotions, it was hope that this was going to be a new chapter after we got through that day, things were going to be different. It was probably the scariest day of my life, not knowing what was going to come, we were comforted in knowing that this was the place for her. Leading up to it, my husband’s insurance was only going to cover 80% of the surgery, we had gotten insurance through the state at that point, as a secondary insurance, and there was a battle with insurances and paying out of state. I had done appeal after appeal for the secondary insurance and they finally approved it. That was just a huge relief knowing that financially, the surgery was covered. That out of everything else that was going on, that was a relief and that whirlwind of emotions, we had left our two year old son my parents’ house at that point.
Leaving my older son at home was hard, because he hadn’t ever really been away from us, but a relief knowing that we didn’t have to have him with us and go back and forth, that we could just focus on being with Amelia in the hospital. So that morning came and her surgery got bumped to the afternoon because an emergency case needed to take place prior. It was hard, it was hard waiting. All the emotions, it was hard with her because she couldn’t eat or drink and at seven and a half months it was kind of tricky.
The hardest thing was handing her over to the anesthesiologist and knowing that potentially there was a risk that I wouldn’t see her again if she didn’t survive the surgery. Knowing that that would be the last time that I would hold her for quite a while was hard. I remember breaking down in tears watching him walk her away. And we were led to the surgical waiting room where we waited like eight and a half, nine hours. They gave us updates throughout, it was hard. Surgery ended late in the night, close to nine or nine-thirty when Dr. del Nido met with us, told us that surgery went well, that she did great throughout it. It was another hour and a half before we were able to go into the cardiac intensive care unit and see her. Never in my wildest dreams did I ever imagine she would look the way that she did. I think it scared the living heck out of my husband because he didn’t have any idea of what to expect. I remember walking into her ICU room with my husband to see her, and she was this little tiny thing with so many tubes coming in and out of her. Basically a wall of medication drips for the IVs and all the various things, and monitoring her, she was sedated, that was shocking. That was really, really hard to see. Seeing the little dressing on her chest from where they had done the surgery, that was emotionally tough to see her like that.
Then it was just waiting. Waiting to see how she was doing, waiting to have the meds adjusted, just sitting there. That first night, my husband stayed most of the night and then he did go back and sleep, and I remember just sitting just watching the time, and just watching her and just being in awe of our journey from finding out at twenty weeks to now seven and a half months of age just having gone through open heart surgery. You sit there at times and you wonder “Why? Why is it happening?” and “Why her? And Why us?” and just trying to believe that the worst was behind us, that it was a positive thing, and that there were just good things coming and that this was going to be a change of life for her.
Our big one year post-op appointment was great, and even though Dr. del Nido had repaired most of the issues with her heart, there were still some that we needed to watch, and there was the potential for another open heart surgery, but at that point they were thinking that it was going to be quite a while out. We knew after the first surgery that some of the narrowing in one of her arteries was still there, but they anticipated and were hopeful that it would open as she grew and as her heart was pumping more normal, and as her heart recovered. Then in echoes and things like that, it was showing that it wasn’t. In the summer, I noticed as she was running and playing, she was more sweaty, she was more out of breath. I always try to treat her as a normal kid and when she’s sweaty and out of breath it’s like, “Alright, well she’s just been running around, it’s not because she has an extensive heart history.” But she did seem like she was overworking, so we had scheduled an appointment. In December, she had to have another cardiac catheterization, and I did not anticipate Dr. Lang coming out of that and saying she needed open heart surgery again. He said that she was kind of at the cusp of needing surgery, and that we wanted to be ahead of the game and not behind it, so we scheduled surgery then for the spring to go back in and open the narrowing that was in her heart.
That surgery was a lot different and a lot harder in terms of—she was six years old at the time, she wasn’t an infant, she was able to verbalize. I had to be a lot stronger, I couldn’t break down in front of her because I didn’t want her to be scared. Having to explain this to her, explain in a six year olds terms what was going to happen to her. Knowing that she was going to have to miss school, that she couldn’t dance in her dance recital—and getting her to accept it and be ready for it and then get her through it. That was a larger challenge with a different entity than what we had done at seven and a half months with surgery. She did great through it, she was certainly scared. That was hard too, watching them wheel her away. When she was a little baby they had given her medicine to relax so she wouldn’t remember things, but that was hard, just knowing where we had been before and this is going to be where we were going to end up in terms of seeing her in the ICU after, knowing what she had to go through, what she had to entail. But she did great the surgery was only four hours. She again was the talk of the ICU because she got extubated a couple of hours after surgery.
She had been through open heart surgery and she wasn’t in a lot of pain and she didn’t want a lot of medication, which was amazing to me. She’s a tough little girl, it’s amazing. You think about if you had open heart surgery, you hear about adults having open heart surgery who are down for the count for a while, and in a lot of pain, and she was nothing like that. That time we were in the hospital for a week, and then we came home and she was out of school for two and a half weeks, and then went back half days, and then progressed to full days. She wasn’t able to dance in her dance recital, which was probably the most upsetting thing to her in all of this, not that she had to have surgery, that she couldn’t do her dance recital. But she went and watched and the school was really supportive of her, and it was a good thing for her. It was a lot of positives.
– Roxanne, mother of Amelia, age 7, Dextrocardia
His oxygen saturation was very low for an extended period of time. Every once in a while, they would go down pretty low, but they tended to pop back up within a certain amount of time. And I remember they were low 60s, 50s, and so we called them at noon and an hour later they called saying to get in the car and come back up for the surgery. So, it was like two times in a row when it was like, “Oops! How fast can we make plans and decisions on a dime.” So I think that whole whirlwind of making sure my daughter was set, getting everything we need packed up, getting him up to the hospital, getting out of work, because at that time, the grandparents would actually watch Johnny while I was at work, so yeah that’s where the emergency part came in. It was time, whether we wanted it to be or not.
It was very hard. It’s hard to think about now. It was hard. We were optimistic, and we kind of throughout it all, tried to stay very positive, and kind of always expected that he would get the best care and we would have the best outcome, but despite that, you always have in the back of your mind—I would just remember holding him right before a surgery and we didn’t know. We’re going to say our prayers and hope that we have the best of luck with this surgery, but you still have these thoughts that this may be the last time you’re holding your child. Very hard. He was in the hospital probably for about two and a half weeks after the surgery, which to me was absolutely amazing, that a child with such an amazingly complicated surgery that we were bringing him home after two and a half weeks. So I think we were very fortunate in that respect.
– Abigail, mother of Johnny, age 9, HLHS
For the next three years after his initial surgery it was 25 hospitalizations. Luckily, none was longer than that first one. We got to a point where the doctors knew us. Every trip up there was like Grace and I going to boot camp. We’d get in the car every morning, Austin was basically too young to almost understand what was going on. I’d carry him into the operating room every time, they let me carry him right into the OR room every time. That was the most brutal thing I think I’ve ever done, three or four times. Just carry him in, lay him on the operating table and have him holding your hand, and then they just walked me out and I hit the deck. I couldn’t even—it was like, “Whoa.” And then we sit and wait in that damn OR—the waiting room up there, you sit there and sit there and sit there and sit there and all of a sudden you look up and here he comes, walking down like you see on ER or on those shows, they’re walking toward you and you see a blank—there’s no emotional anything on his face. He just comes over, crouches down, looks at you, and God—most of the time some of his phrases were like, “Everything is good. It went well. We’ll see you upstairs in 45 minutes.” It was just like, “this is our life!”
– Scott, father of Austin, age 10, TOF
Leah’s surgeries were all in Boston. She went back at about four and a half months for her Glenn- we were in and out of the hospital here in our home state three or four times in the interim just with low oxygen saturations. But we went back to Boston for her second surgery, and it went pretty well, we came home and about a day later she was looking pretty puffy, and so we went to the pediatrician and her saturations were low again, and we were immediately hospitalized, and she was very sick at that time. She ended up having an effusion around her heart, she had an effusion in her lungs, they had to put in a chest tube, they had to put in a pericardial drain, and plans were made for us to be medically lifted back to Boston. She was extremely sick, and so they had to intubate her, and we were coming back with her, because she just was in bad shape. And we ended up staying in Boston in the ICU for about three more weeks with no real answer to what was going on, she just kind of all of a sudden got better. Leah kind of does that, she’s like a light switch, when she’s great she’s great and when she’s not she’s not. There’s really not much of an in-between.
But anyway, she was better and we came back home and she did great for the next couple of years until she had her Fontan, and that was at about two and a half years of age, and she had a hard time with that. We had never gotten a phone call from the ICU in the middle of the night until that surgery, and it was her first night post-op, they called us in the middle of the night and just wanted to let us know that she wasn’t doing well. We were staying at the patient family houses, so we hurried up over there and struggled the whole day, and then the next evening they came and talked to us and told us they needed to put her on ECMO. It was her lungs, her lungs always seemed to be the issue after her first surgery and it took a long time to wean her off of oxygen after her second surgery. She had an effusion and that was part of the issue that had us medically lifted back to Boston after her second surgery- she had pericardial effusion then with the Fontan her lungs just were not liking the changes and she was in acute respiratory distress. And she also had- her abdomen was huge- they put a drain in there and drained like a liter of fluid out of her abdomen. She was sick, she was very sick, very unstable. And she was on ECMO for five days, and then remained on the ventilator for another week, when she extubated herself. Then after that surgery we were in step-down for about another month because again she developed pericardial effusions and needed chest tubes and that was a very difficult time as well because she had been on ventilator for two weeks, she was so weak, she was two and a half years old and had to learn how to sit again, learn how to walk again.
Then we had to give the tough love and take away that wagon out of her room and tell her she had to walk to it, just to help her gain her strength back, and it was hard because she was a different child as well. It was almost like she was depressed. You could look in her face and she just was not the child that we had handed over to the surgeon two weeks prior, and so that was a struggle. But one night in the middle of the night, it was my husband’s night to stay with her, he started juggling this cow that mooed and she cracked her first smile in weeks, and we knew then we had our Leah back and she was going to be okay. But it was the hardest thing I have ever had to go through.
– Donna, Mother of Leah, age 10, HLHS
He was six months when he had his second surgery. He was cathed at five months, that was a really difficult one. He was supposed to be home the next day and I think it was a week in the hospital, he had some complications. And then the second surgery actually went really smoothly. He was two years old when he had the Fontan, so a year and a half later. It’s really hard because you have this other surgery coming and so you can’t ever really relax. He was very healthy during that inter-stage period for the second. I can’t remember the details too well, it was a long time ago, but I remember there were ear infections and things like that, pretty typical baby stuff. From his third surgery onward, we dealt with chronic infections, but I don’t think he had the asthma in that period. But that year and a half between surgeries, honestly is a big fat blur.
– Diane, mother of Jake, age 21, HLHS
Courtney: Yeah, the crib was up very high, almost at eye-level so they could work on him, you know, right there. I remember walking in and seeing this raised table with all the people standing around and all the wires and that was really scary. Really scary.
Richard: The first time. When it was the second surgery it was fine.
Courtney: I also remember seeing a teenage boy in one of the rooms next door, and it’s scary to see other patients, because you’re so intent on focusing on getting through your situation, but you can’t help but feel empathy for the others around you. That’s the reality of a hospital. They got David out pretty fast, I mean we were in and we were out, and he healed very quickly and there were no problems at home, the scar was fine. From what I recall of that surgery these many years ago, it was very successful. We thought he would never have another surgery.
– Courtney and Richard, parents of David, age 23, TOF