From February to September we were building up to the surgery and then surgery went great. It was a few hours, she was up and talking hours later, we were just blown away. Then that night she had a series of very scary arrhythmias, and that was unexpected. A whole new round of, “Oh my God, what’s happening?” Things went wild, 20 doctors rushed to her bedside. The unexpected was not something I was prepared for, which is a silly thing to say, that’s the whole point of the unexpected, but I was bulldozed by that. What was so hard on us at that point was that we had sort of let our guard down. We thought we were through. We knew that the next couple of days in the hospital were going to be hard, trying to keep her comfortable—not physically but emotionally, but this was a bump that we were not expecting.

By morning we had a team of electrophysiologists who had a medication plan and they diagnosed her with supraventricular tachycardia (SVT). She was on medication for that three times a day until about a month ago and now we’re trying her off of it and seeing how she does, and she’s done great so far. But each step is hard because we were safe on that medication. It was nerve-wracking taking her off, she wore a Holter monitor for 24 hours a couple of weeks ago, and things looked good from that. It’s still steps of feeling good and confident and safe, but they’re steps in the right direction. We’ll take it. For us going into this, it was hard because we didn’t have a sick child we felt like we were bringing in to make better. She didn’t have symptoms. It’s not like she was unhealthy on the surface. We never would have known. So, we didn’t look forward to the surgery as, “Oh, you’re going to feel so much better after this.”

It was hard because we were saying “My gosh, are we sending what looks like this perfectly healthy wonderful child in for a potentially horrible experience?” You never want to go there in your head, but you can’t not have a sliver of your mind go to the most horrible place. So now to see how she’s benefitting from it, is wonderful.

 – Jessica, mother of Avery, age 2, ASD

 

The day after they were born, they brought Danny to me and I was taken in a wheelchair with my husband over to Boston Children’s and went to see Brian in the ICU. He was all wired up, and they did a good job when we got there of showing us what to expect in the ICU. He looked phenomenal—they were impressed with his O2 sats, his coloring, his breathing, everything about him was looking great. And beforehand, Dr. Breitbart had explained that it could go one of three ways, “1) He’ll require the first part of the three part open heart surgery within the first couple of days of life, or 2) they can stent him and keep his PDA open (which obviously is a far less invasive thing than open heart), and that way we could take him home and fatten him up and come back in two months for the first surgery. Or 3) best case scenario, he goes home without anything and be closely monitored with whatever they would set in place for us.” But they wouldn’t discharge him until they knew it was safe to take him home.

After the first couple of days it was looking like the best case scenario—that we could take him home, we’d have to care for him without even having to do anything surgically. It was the fifth day of life when we went to check on him because he was discharged to the floor. They had kept his PDA open right at the beginning to help with the blood flow, and then after a few days he was doing so well they decided to see how he would do as it closed. They could see as it was closing that he was declining. The doctor felt that we had to put the stent in, that was just the best thing for him at the time.

That was a blow and a shock—like someone punched you in the stomach because you think you’re going home the next day with him, and now he’s getting a stent and it’s going to be another week and a half that we’ll be here. He was scheduled for that procedure the following day. I remember going in there and he had an oxygen tube and I was just crying, and keep in mind I have another baby and I’m a first time mother and have no idea what the heck I’m doing anyway. I was so drained so seeing him with an oxygen tube in his nose just broke me. And of course he couldn’t eat and that’s all babies want to do at that time, so they’re bringing him down to the cath lab before surgery and he is just crazy crying, crying, crying. I remember them trying to put the IVs in, and the veins were blocked, they couldn’t get it right, of course his veins are very small plus he’s a baby so it’s hard to find them, so it was just one thing after another. I don’t even know what he was feeling, but I was just helpless, I couldn’t do anything for him.

He got into surgery and we went down to the waiting room and prayed a rosary over and over again. Literally 20 minutes later, the doctor come out like, “It went phenomenal! I don’t think it could have gone any better, he’s in recovery, everything’s fine.” And then he’s mid-sentence and his beeper goes off and he walks out of the room because he has to take it, and then he walks back in and he’s got a different look on his face. Basically he says that, “There’s a complication, apparently Brian has just thrown a clot in the stent.” It happened in a matter of less than 10 minutes, later they said it’s literally the world’s fastest clot they’d ever seen thrown. Our whole world just dropped, I mean, what the heck? So, now they were now going to do the most aggressive part of our original plan, the open heart surgery. They were able to pull the clot out from the stent, so he was stable, but he went into a surgery called the Norwood. I try to block that first two weeks out of my mind. He went into open heart surgery that night, that’s how rushed it was. He was a lot worse, he was stable but they didn’t hesitate.

We sat in that waiting room and cried and shook and prayed and it seemed like forever, it was several hours, of course. Then it was maybe two in the morning and they were like, “Hey, y’all should go get some rest, he’s stable, they’re transferring him to the ICU.” We go to the Yawkey, and my mom’s with Danny the whole time, she was basically his mother that whole period. I couldn’t have done it without her, I was still breastfeeding too, so that was just a whole other element of exhaustion. Within two and a half hours—so it’s four thirty or five in the morning—they call and say that Brian has thrown a clot in the shunt that they put in, so it’s not looking good. They want us to come down, they’re having to do CPR. The worst call you could probably get.

We rushed down there and they had stabilized him. The doctor and one of the nurses come in and they basically say that they’re very concerned but, “We have him stable, he should be okay to rest through the next few hours. Y’all go home for a bit.” So, we’re freaking out, we go back to the house. Then they called maybe in an hour of us being there and said that he’s going downhill. My husband and I were just, “What does this mean? What is happening.” My dad had called to check on us, but we just yelled at him and said, “It’s not good” and kind of blamed my sister who had died a few years ago, like “Why can’t she do anything from up there?” Just, you know, crazy things going on in your head.

We went back to the hospital. They wanted him to rest for a couple of days, and then he’d have his next surgery. They had got together some colleagues, the best of the best, and this is a very rare situation and not the procedure that they were going do, just the fact that this happened, they can’t explain why he was throwing blood clots—it happens in 7% of these cases. The doctors figured it out and they didn’t put another shunt in, they actually stitched something into part of his heart, one of the muscles. Anyway, that was the second open heart surgery. That ended up being the temporary fix. We were in the hospital for almost two months, just waiting for him to get better from everything that had happened to his little body within the first week and a half. The worst part was over. Everything that was traumatic happened within that first week and a half of his life. Every time my husband got a call, people would just have to say certain things after he picked up the phone, because they’re calling to check in with you about stuff constantly. I just assumed that every call was going to be devastating, because that’s how it was. As the days went on it got much better, his condition stabilized and he was getting better little by little.

 – Lindsay, mother of Brian, age 2, Heterotaxy

 

We kept going to our local hospital because by then we had established a relationship with the team there, the doctors, the nurses, and they were the ones that we followed up with for the single ventricle program, that we checked in with every week, so we didn’t really think about exploring other options for hospitals. At four months old he went into another heart catheterization, and they decided “Okay, he’s stable, let’s do his Glenn.” So he had that the day after he turned four months old, and he did well with the surgery, but a few days after the surgery he developed fluid around his heart. Typically they like to keep you there for three to five days, but because they used a syringe and took fluid out from around his heart he had to stay in the hospital a little longer.

Unfortunately, around that time he came into contact with someone at the hospital that had shingles, so he contracted varicella. He got chicken pox three days after his open heart surgery. So it kind of changed everything. He went from being a kid with a heart condition, to a kid on life support, not sure what was wrong with him, they didn’t know why he started crashing. It took almost a month for them to figure out that he had contracted the varicella, and by that time he was on life support in a medically induced coma. Once he started being treated for the varicella, they tried to take him out of the coma and see if he could breathe on his own, and that’s when we discovered he had a major stroke when he was under. So he went from being a child born with a significant heart defect to being a completely medically complex hemiplegic. He’s got hemiplegia on the left side of his body, lots of developmental delays, feeding issues, breathing issues. So it became so much more than just the heart.

 – Alice, mother of Zach, age 3, Single Ventricle

 

That night after his surgery I was going to sleep bedside, my husband was going to sleep in the family unit. I was laying on the window bed with the little curtain drawn, Austin’s little crib was probably six feet away from me, but on the other side of the curtain. The nurses said to me, “The first night post-op there’s going to be a lot of adjusting things, a lot of activity, but no need to panic when you hear a lot of activity out here.” I said “Okay.” Then probably about 45 minutes later, the nurse called a code. I just sat up, but I was still behind the curtain, and I was in shock. I was saying “What’s going on?” I could hear all the commotion on the other side of the curtain, and I remember saying, “This isn’t happening, this is a bad dream, this isn’t happening, what’s going on?” And I pulled the curtain back and at this point the room looked like the operating room.

When I got into the hallway, I just dropped to my knees. Another couple was hugging me, and all they kept saying was, “God is good. God is good. God is good.” Somebody said, “Can I get you something?” and I just said “Somebody get my husband.” They sent somebody downstairs to wake Scott up. My husband got up there and he sat—we were on the floor in the hallway. I couldn’t take my eyes away from the bed space because I didn’t want them to stop trying to save him. At some point they went by with the ECMO machine. He spent the next three and a half to four days on ECMO, and thank God was able to gradually be weaned off of that. And knock on wood, he has no ill-effects from being on the ECMO. It was a scary time. I mean, I look back now and-he was in the hospital for a total of 13 days, which seemed terrible at the time. We didn’t know if we’d ever be bringing him home. I can look back now and say it’s truly amazing.

 – Grace, mother of Austin, age 10, TOF

 

Melanie: He had surgery on Thursday, and on Sunday in the morning the nurse practitioner came in and said “Well, we did some labs and an echo, everything looks good, you can go home today,” and I’m like “huh?!?” because we’re three hours away, and Dr. Newburger and I had talked—she said maybe Monday and I said, “Do you think we could push it to Tuesday because I’m really nervous about going home that far from the hospital,” and she said “Yeah, we can.” He had the labs and he went down for an echo, was fine when he went down, insisted on walking to the elevators and stuff, and we were down there way over an hour with him lying mostly still that whole time and we came back and all of a sudden he said, “Mom, I don’t feel good.” I went and got the nurses and his blood pressure was like 240 over 140 and immediately, zoom, swarmed, doing vital signs and stuff. Dr. Newburger happened to be the on call cardiologist that weekend. For us to have her on call just made me so much more comfortable because she’s the expert on this.

Walter: She came flying in and in about ten minutes he was in the ICU.

Melanie: I couldn’t pack fast enough to get back into the ICU. And then they needed to get another line in him because what she came and told us, “We need to do another CT scan because I’m afraid the repair has failed and that we’ll be going back to the OR.” So that was for both of us a total kick in the stomach and I’m thinking, “I’ve been through this once, I don’t know if I can go through this a second time,” knowing what you face and what he faces. He didn’t know the first time, so often when you don’t know, it’s a little easier on a patient his age I think.

Walter: So they needed a CT scan. And of course weekends, nobody’s there—Dr. Newburger’s on the phone, dragging somebody out of Brigham—

Melanie:—and she’s talking to Dr. Emani, who’s at home. It took hours, agonizing hours to get his blood pressure down, and then finally they said, “We’re going to do the CT,” even though his heart rate wasn’t as low, because they get better pictures the lower the heart rate is. They do the CT scan and then Dr. Newburger found us shortly thereafter and said “The repair is fine, we don’t know what happened.” So they continued to work on getting his blood pressure down, and he spent the next day in the ICU being bored out of his mind, because he felt okay by that point, his blood pressure was better.

Melanie: He was out of the ICU in less than 24 hours.

Walter: He still had his chest tubes in him, but he was so determined that he’s going to play soccer, and whatever it took to make it happen, he was doing it.

Melanie: It didn’t matter how much it hurt, he was going to do it. And I hear from other people, a colleague whose daughter has had several cardiac surgeries said afterwards, “I didn’t want to tell you, but that happens a lot that they go back to the ICU” and I’m like, “We were going to go home until we were back in the ICU.” It took a couple of days to get his blood pressure under control with oral medication, so he was discharged on two oral anti-hypertensive medications. That was Sunday that it happened, and we went home on Wednesday.

 – Melanie and Walter, parents of James, age 20, Anomalous Coronary Artery