They expected a normal birth based on how she was doing on the inside. We were really lucky, I was induced because they didn’t want me to go into labor on a weekend or on a holiday when nobody’s around. She was fine at birth, she was breathing on her own, she wasn’t blue, she was totally fine. I had a C-section, which wasn’t planned, but that’s how it goes. I didn’t get to hold her, but we got to see her for a little while and then she was taken up to the NICU for a few hours. By that evening she had moved into her room at the cardiac ICU at Children’s.
Heart babies have to have constant IV of this chemical that keeps their heart pumping, and so she was hooked up to that within seconds after she was born, through the umbilical cord. She was born on Wednesday, her surgery was on Friday and we knew that was going to happen, that wasn’t a surprise. She was a champ, she did great. I think she spent three days in the cardiac ICU, and then she was moved out to the floor on Tuesday morning. I want to say she was in the hospital for a total of two weeks.
– Leslie, mother of Margaret, age 2, VSD
Once I was in Boston it was like, “Let’s just get on with this thing, let’s see what we got.” And I remember being on the operating table and, they told me that Brian’s twin was going be a shrimp, he wasn’t growing anymore. I carried them to 39 weeks, but we actually scheduled the surgery based on Danny, who’s the twin, the healthy one, because his embryonic sack wasn’t growing anymore. They pulled him out and I’m like, “How small is he? How small is he?” And I’m a very dramatic person in general. And so they’re like, “He’s fine” and they know he’s five pounds three ounces, and then I’m not even thinking about Brian, and they pull him out and I’m like, “How blue is he?” and they’re like, “He’s not even blue, he looks great” and just before that, my husband who was standing right behind me is literally asking me, “how long before they open their eyes,” and I’m like “Oh my, they’re not dogs!” The anesthesiologist was just laughing, the fellows were just laughing, I mean we just had them cutting up I think the whole entire surgery. It was just hilarious, the drugs and the medicine and all that stuff. But it was all good until it wasn’t.
– Lindsay, mother of Brian, age 2, Heterotaxy
I had a scheduled induction at 39 weeks, I ended up having a C-section with him at the Brigham. and Children’s was basically OR prepped and ready to go because they were assuming that the minute he was born and that cord was cut he would crash and he would be immediately in the operating room. He did better than we thought, so that was great! He was born, he was definitely really blue, but he did cry, which was awesome. They kind of let me see him for a minute before they took him to Children’s, it was definitely a frantic, kind of crazy time. He was a sick baby, and we knew that, so everyone was kind of rushing. He went right into the ICU, he was on oxygen, but he was not intubated right away, and he was very sick but he did okay. We all assumed he would be in a life threatening emergency at birth, and it wasn’t quite that bad. Within about 24 hours, he was born, had the cardiac MRI, was intubated for that, and then went into surgery for the veins.
Carson was in the hospital for four weeks—we were told four to six months once he was born. I didn’t know anything about cardiac stuff when I was pregnant with him, and so a lot of the stuff I learned as I went, which I think is good because if you try to take it all in at once, it’s so overwhelming. But when we had met with our team, they had advised us that he would more than likely be on ECMO for a while, and I had no idea what ECMO was, so to me it was like “Okay, whatever, ECMO, not a big deal.” Now that I know how much of a big deal it is… After the fact, learning about that, I’m like “Oh my God, he did so good.” He was never on ECMO, he never really had any of those complications. They left his chest open for five days post-op because they just assumed that the surgery wouldn’t work. The veins are so fragile and they had to do so much to them, so much manipulating, and the surgery that he had was a suture-less repair, so they couldn’t use stitches or sutures on any of the veins, so they created a pocket in the back of the heart and basically just laid the veins into the pocket and allowed the body to heal around it. That’s layman’s terms, I don’t know exactly what they did but that’s kind of how it was explained to us. So you can’t move, or else the veins could move and disrupt or kink or obstruct or any of those things, so there’s a very delicate, domino effect situation to it, if one thing goes wrong, the whole thing is going to crash. So they left his chest open and nothing happened. He just did great. Finally on day five they closed him up and for another about ten days he was sedated, and they worked on his lungs, he was having some challenges with fluid and collapsed lungs, and then they pulled the tube two weeks after he was born and he was breathing on his own. We stayed for another two weeks just to finish recovery and get him eating a little bit and we were released. A few bumps in the road, but fairly uneventful.
– Amanda, Mother of Carson, age 5, Heterotaxy
We had met with the cardiac team, prior to delivering, trying to get an idea as to what the after birth was going to entail, they didn’t know. They didn’t know what type of surgery she would need, they didn’t know how it would proceed, they were just kind of waiting until she was born and then would decide then whether she was going to be whisked off to open heart surgery, whether it would be days after, hours, it was just all unknown which was just very hard to try and understand and accept and have a game plan.
When she was born she came out screaming. I remember hearing her. I had a normal natural birth with her, and I didn’t get to see her after I delivered her, and they whisked her away. And I remember hearing a baby screaming and I looked at my husband and I said “Is that her?” It still gets emotional. And he said “Yeah, that’s her.” And then like a minute later one of the nurses brought her in and let me look at her and said, “I can’t let you keep her, but she’s good, she’s got a good color, she’s breathing, they’re going to work on her.” And we didn’t get to see her for four and a half hours after she was born.
Then we got brought down to the NICU, where they had her in one of the incubators monitoring her. They had done an ultrasound on her heart and they said that at this point in time, her heart was functioning for her, that she didn’t need emergency surgery, that they were just going to see what played out in the next 48 hours. So each day went on and she was in the NICU in Connecticut for five days. We went back and forth visiting her, because we also had a 20 month old son at home. She was discharged, her heart was working for her body, she wasn’t short of breath, she wasn’t diaphoretic, any of those things. So we were able to bring her home. I was breast feeding her and she was thriving.
– Roxanne, mother of Amelia, age 7, Dextrocardia
We had to change my birth plan because they can’t monitor the heart through the birth canal, so we were told right away that we would have a C-section- which I didn’t have a birth plan for that. I guess I knew what to expect, but also having twins is more high risk anyway. So they had a team of doctors and they had pediatricians for both twins. But I think it was more- with any birth- I definitely was more anxious than I was with our first child, just because there were two of them, and with Alexandra. But as far as what was going to happen with Alexandra, they did a great job communicating and telling us- you know, Dr. Alexander really prepared us really well for it.
I delivered the twins and then Alexandra went straight to Children’s. We had Susie with us, and then my husband could push me in the wheelchair and we could go see Alexandra. Right after birth they hooked her up for an IV, it was 36 weeks, and it was a scheduled C-section. I actually didn’t get to see her until the second day after birth because she was having a little bit of breathing problems, so they ran her to the NICU. They were monitoring her and by day two is when she had the surgery. It was open heart at that point. They attached the leads for the pacemaker to the heart. It really looks like an iPod nano. She has a scar down her chest. We knew the whole time that was going to happen.
– Kate, mother of Alexandra, age 8, Heart Block & Pacemaker
When she was first born she looked great. Her APGAR scores were great, so there was no immediate rush to get her to Children’s. They actually let me hold her, and I tried nursing her so it was almost a normal delivery room experience in that we were able to hold her. Then they took her up to ICU while I was moved over, and started the line through her umbilical cord—the line to keep her PDA open, and she was still doing well enough that they brought her back to me before transferring her over to Children’s, and then her first surgery was when she was two days old. Initially after birth, you never would have known anything was wrong with her, but two days after she was already having apneic episodes, so she was ready for her first surgery. She had the Sano, the modified Norwood.
– Donna, mother of Leah, age 10, HLHS
I very much believed that his prenatal diagnosis saved his life. As hard as that pregnancy was for us, I firmly believe that it’s the reason he’s with us because our plan was to have him delivered at a local hospital, where a lot of these kids, they’re born looking fine and then a couple of days later they crash. We would have been at a hospital not equipped to deal with that, so we really owe that prenatal diagnosis to him being here. The delivery itself was honestly really easy—he’s like “yeah, I’ll give you a break.” But it was when people started pouring in that it got really scary. I think there were 13 people in the room when I delivered him. So that was very real, and it was important for me that Bill go with Jake and not stay with me, I wanted him with him, so he did that. Jake’s first surgery was three days later. The doctors had told us to expect and prepare for up to three months in the hospital after his first surgery, and we went home in three weeks, which was incredible.
During the first surgery they actually had to put him on bypass a second time, they had already cooled him down, they put him on bypass—they were giving us hourly updates—and we got the update that they were warming him back up, but then we got another update that they were cooling him back down and putting him back on bypass. And I knew that was really a bad thing, but neither of us thankfully knew how very bad that was. The cardiologist told me later that that most kids don’t come off bypass the second time, but she said he really sailed right off of it and that was a turning point for him, and he did really well in the post-op. He came home three weeks later and was readmitted two days later for a couple of days and then he went home during his inter-stage period, and really did very, very well.
– Diane, mother of Jake, age 21, HLHS
I counted 13 people in the delivery room, including the priest. We chuckle at this point, but we wanted him baptized because there was a chance that he would be stillborn and there was a chance that he would be born and live for a very short time without treatment. So we had the priest there, we’ll never forget it—he had a syringe with holy water. And Jake came out and he looked fantastic, pink and perfect and you would never know what was wrong, and he baptized him right there. He was probably out of the womb less than a minute when he was baptized. Then those 13 people held Jake up to my wife, they took a Polaroid picture—back in the day, that was what they took—and then they put him in an incubator with wheels and they literally took off.
I kissed my wife, I had the assurance of the doctor she was going to be fine, she said “Go with Jake” and six people took off across the tunnel to Children’s with me. This sounds like a movie, but we were in the tunnel and one of the nurses said, “this baby’s not breathing” and they took off running with this incubator and the wheels and me sweating like a pig right behind them. He either started breathing again or she was mistaken, and that was probably the lowest point because I thought “Oh my God, my son’s going to die right here in this tunnel” and my wife just gave birth. You really don’t know what to do because nobody plans for this.
But the other story is about that Polaroid picture. Jake was in the NICU for five days because and he was really failing. I took my wife in a wheelchair down to the chapel, just to say a prayer for Jake and my family and everything that was going on. It was me and Diane, and in the bottom of the wheelchair there was a basket and in that basket there was that picture, that Polaroid picture. We went in the chapel and were in there for about 15 minutes, we came out, the chair was there, but the picture was gone. The only picture we had of Jake before he was in the NICU with all the tubes and all the gear, was gone. It was devastating to both of us. But we also saw that as sort of a sign that, “You’ll have plenty of pictures of Jake.” At the end of the day, that was somehow strangely reassuring.
– Bill, father of Jake, age 21, HLHS