What you can do to manage a new born surgery for a heart defect: Amy's birth story, Part III

This is the THIRD and last part of Amy's story. 

In this episode she talks about 
* the importance of accurate ultrasound in utero 

* her experience of navigating a surgery on her newborn

* the challenges they encounter in the hospital 

* her son's amazing recovery. 

This is a beautiful story of overcoming, and what she learned in the process. We pick up where we left off last week. Amy is talking about an organization that works to draw attention to the important work of sonographers--in particular focused on congenital heart issues

Transcript

Paulette: Welcome to What you didn't expect in fertility, pregnancy & birth. How we think and feel about this enormous transition often lives in the gap between what we expected and what we actually experienced. This gap exists in part because of how we tend to talk about and portray these events on all kinds of media--in a one dimensional way--everything was amazing. But it's more often the case that there are beautiful things that happen AND at the same time, really challenging things that happen. This show shares true experiences, both the easy parts and the difficult parts and how we managed what we didn't expect, the intense things that can happen in the course of this transition can impact how you see yourself, how you see your partner and how you parent The better we understand what happened to us, the better we can manage all the things that follow. I’m your host, Paulette Kamenecka. I’m a writer and an economist and the mother of two girls and I met many, many challenges in this process, none of which I expected.

This is the 3rd and last part of Amy's story. In this episode she talks about the importance of accurate ultrasound in utero and her experience of navigating a surgery on her newborn; the challenges they encounter in the hospital and his amazing recovery. This is a beautiful story of overcoming, and what she learned in the process. We pick up where we left off last week. Amy is talking about an organization that works to draw attention to the important work of sonographers--in particular focused on congenital heart issues

Amy  0:10  
There's this charity in the UK called Tiny tickers, and they fund research and programs to help stenographers learn how to detect heart defects better, and they have found through their programs that they have increased the rate of detection in Wales, and now they're moving on to Scotland, I think they just started doing and it's incredible to see how their work impacts the lives of others. If we want to catch more heart defects. We need to help stenographers and give them the support that they need. But right now, we're not doing it,

Paulette  0:47  
yeah, yeah, yeah, this is a good cause. So let's get to your son's he's in the NICU. They have opened the for even though Valley again, yes. And then what? How does he progress? What happens?

Amy  1:01  
I'm discharged in the morning because we wanted to be there for rounds the next day. Yeah, so we head up NICU and sit by his bed the next day. We didn't get the chance to hold him. He was still working on being stabilized. It was the first chance I really got to see him since birth, and it's, it's really weird looking at your child and being like, Okay, I know that this kid is mine, but it doesn't feel like it. There's definitely there was a disconnect there. And I think on a personal level, I was afraid to connect, because you don't quite know what's going to happen.

Paulette  1:46  
Yeah, and I'm sure it was just considering to see him hooked up to monitors. And does he still have the paralytics or? No,

Amy  1:54  
he was coming off of them. He was still sedated. So he spent the whole day sleeping. They said he wasn't going to be allowed to eat anything until after surgery, which would happen sometime in the first 10 days of life. But wait, so how are they feeding him? He's put on nutrition, so it's basically just an IV line of the important thing is to keep him going. The point was not to beat him and have him grow. The point is to keep him stabilized and stronger. Birth is not just hard on the parent who's delivering, it's also really hard on the baby. There's enough you have to recover from and so they they told me that they find the best results happen after babies had a bit of a break to recover. So it was just kind of a waiting game until Are you do you have breast pump again or it hasn't come in? Because everything was artificially engineered. I started pumping right away and had a milk production come in within the first few days. I wasn't too worried about my supply, because I knew that he wasn't going to be eating Yeah. So it feels really useless just sitting next to a baby all of these machines. But I mean, if I were to be at home sitting and doing nothing, I would feel even worse, yeah, yeah. So what do you do, yeah,

Paulette  3:23  
yeah. So is he cleared for surgery after day 10

Amy  3:28  
they came in on day five saying, Okay, we're gonna take him in for surgery first in the next day. And in between, he's had some ups and downs. They've taken him off the prostate gland, put them back on. And prostaglandin can cause fevers and rapid breathing and can cause some issues, because it's a medication that isn't necessary for most people, like everything, really looking forward to having the surgery, because up until that point, you're like, Oh, you can feel like your child should be getting better, but then you have these dark realizations that you're literally just keeping him alive until he's ready for surgery. Yeah, yeah. So the surgeon comes in and says, okay, so his heart is the size of a walnut, and moving the arteries to their new positions is a relatively easy thing to do. The challenge and the risk in the surgery is moving the coronary arteries their new home. The coronary arteries are the size of the tip of the ballpoint pen, and you think of it like a garden hose. You can't have it have a kink when it's moved through position. You have to be careful to correct it with your position and not stretch it too quickly. Otherwise it can break and you just have to really take your time with it to get it but based on all of the scans that we have, his arteries are approximately the same size, which is a lot easier to switch, if they both, like, say, the size of the pinky to switch from, like a pointer finger to a pinky size. You have to reshape the diameter of these new positions. They were expecting really good results. The anesthesiologist comes in and she says, Okay, so we have to put him out. He's going to be put on a heart long machine because they have to stop him. They're going to have to cool him down to 24 degrees Celsius, which is 75.2 Fahrenheit, in order to have this happen. Typically, surgery takes between four to six hours. But if it takes longer, it's not because something's wrong, the surgery is going to take however long it needs to take to get it done right? She said that some people ask about cognitive delays based on all of the anesthetic that babies are getting.

Paulette  5:57  
So I looked into this question. Do longer surgeries on neonates or things like cardiac issues have long term developmental consequences. It looks like this issue is not entirely settled overall, while there is evidence suggesting potential risks associated with anesthesia during neonatal surgery, particularly with prolonged or repeated exposures, the findings are not entirely consistent, and more research is needed to fully understand the implications. Looking specifically at cardiac surgery, some studies have found no association between cumulative exposure to volatile anesthetics and neurodevelopmental outcomes at 18 months, suggesting that other factors may also played a role.

Amy  6:43  
We just want to support our child, whoever he is, the best way that he can or the best way that we can help him become the best version of whoever he is. So the next day, we arrive very early, we give him Cuddles, and we do all the things at this point, we still haven't given him a kiss on the head, because we have to be an ass the whole time. And they come in and they roll them away, and then about an hour later, he sent back up because he had spiked a fever overnight. And they said, if we were to do the surgery now, and if it were a bacterial infection, if it increases risk five times. But unfortunately, they had already completely sedated him and intubated him and had him completely prepped and ready for or and then sent him back. Yeah, that was the first time the NICU has ever experienced something like that, or at least so we were told, and we were very patient and understanding, because yelling at people doesn't do any good. We said, please make sure that this does not happen to anybody else, because it's awful. Yeah. So we sat around our sedated for the rest of the day. We said, hopefully we can get surgery tomorrow, at once, his cultures come back. Everything came back clear. So day seven of life, I say, Okay, we're going to take him to or say your good night. I always thought that that was a really interesting way to phrase it. You're not saying goodbye, you're saying good night, but it does not feel like a good night. Yeah, yeah. So I very kindly told him not to be a stinker and that they whisked him away. We were very skeptical. We went over to his cardiac ICU room afterward, and the nurse it was in charge of getting his room prepped, and was supposed to help us out for the day, like, oh yeah, your kids going into surgery today. I said, I don't know, get it started. Maybe he'll come back. So thankfully, he kept checking the computer and says, Okay, surgery is underway. Okay. So then we just had just it. And

Paulette  9:00  
this is the point in our story where I felt like I should take up smoking. Were you guys calm about it, or how did you feel? We were

Amy  9:08  
looking forward to it. It's both the best and worst day ever, because you know that if everything should be okay afterward, but you can't be there to oversee anything or what I really want. We had both tried to take naps on the bed that was there. And so at home, I have this really big garden, and I love the plant pumpkin. And while I was still pregnant, I was tastefully clipping a lot of the extra vines, and I accidentally killed my ties with giant pumpkin by sniffing its main artery. And so while I'm trying to nap, while I can picture my giant garden shears, sniffing away in my giant pumpkin, and I'm like, Okay, I am not surgical person. I am not I am not a surgeon. You are not in charge of killing things with garden shears. This is why you're not that person. So to remind myself that the surgeon was competent, capable, yeah, that they weren't going to have an unexpected sneeze, yeah, and do something awful, had to, I kind of just clung on to that 96% rate. And then we got the heads up that he was going to be returning and that we had to get out of the room so they could prep and stabilize inside the room again, covid has shut down everything in the hospital. There's no communal room. There's nowhere to really go, so we were sitting on a couch in the hallway waiting for our kid to return, and elevator doors roll open, and we see a bed come out and a surgeon and a anesthesiologist, and they're like you did really well. Do you want to come say hi? My wife gets up and runs to go say hello, and my heart is just pounding, and I've seen my friend whose son who's returned from this heart transplant. So I know what to expect visually. You can't really prepare yourself emotionally for what it's going to be, but I at least knew I wasn't going to be completely thrown off by what the visual was going to be. So I saw him, and I gave him a little I was very quiet, very reserved, trying to just internalize it all. We waited for about an hour. They worked really hard to raise his body up, because he's beyond hypothermic. Yeah. And finally, we're allowed to go in. The surgeon said it went amazingly well. These are the other risk things that we're going to be looking out for during recovery, etc, etc. But yeah, we're finally allowed to go in, and his nurse is like, Okay, so these are all the things that he's hooked up to, and they go through each line, each tube, each wire, each medication, and you keep expecting for it to end, and it just goes on and on and on. And I felt sick to my stomach, like I can't I can't handle this. So I go and I pull up a chair, and I sit down beside him, and for the first time, it really looked up at him. And so I noticed that he was pink. I guess the first time that I was like, holy moly, he's pink. Like, you don't notice how not pink your baby is until they have that color that they should have. Yeah, and I knew in that moment that he was going to be okay. It was just a matter of getting to recovery.

Paulette  12:36  
Well, that's amazing. And how long is he today

Amy  12:41  
at that point, they they started cleaning him off of the sedation, drugs like the the main goal was to get his blood pressure under control. He needed, I think, an extra or one unit of blood throat surgery make sure that his bleeding stopped internally. He had drainage tubes and everything kind of hooked up to him.

Paulette  13:06  
That, for me, conjured the garden. Yeah, those tubes, right? I was like, this is from someone's shed. Is there a tube?

Amy  13:14  
Yeah, I at least knew what to expect visually. So I knew that the tubes be a part of the topography of what he would look like when he came out.

Paulette  13:25  
This is really inside baseball for parents of kids with heart surgery for newborns. Maybe it's also the case for other kinds of surgery for newborns. But on my daughter, there were two thick, clear plastic tubes a diameter of, I don't know, maybe a dime sticking out from either side of her body for about like an inch around her ribs to drain off fluid, and there were more industrial looking than I would have anticipated. I, unlike Amy, was not prepared to see that in the NICU.

Amy  13:58  
But it's still really bizarre seeing these little Squeezy balls of blood. And the nurse that I know it looks like there's a lot in there, but it's because it's spread out. It's not as much blood as you think, Okay, I think what was really hard for me was, and it makes total sense, was the tiny little restraint bandages that they had around his arms and his feet. I had never considered that your child needed to be restrained, yeah, but it makes sense, because baby's pulling everything, yep, yep, but I can imagine myself being restrained and not being able to move, and having tubes and wires and all of these things coming out of me and panicking, yeah, and I can't. It was at that point that I had that connection, that mom instinct, and I was like, Okay, I'm here for you. You're not alone, right? We got this buddy, so he hung onto my finger for dear life, and we sat beside him, and two days in the cardiac care unit, he was sent back to ICU because he was stable enough. The only medication he was on at that point in time was infant Tylenol. Is needed? Nutrition, wow, and milk. He was on food again. We couple days after that, we were sent down to the step down ward, and eight days after the surgery, we were sent home, crazy fast, right? Yeah, it's amazing how resilient these teeny tiny humans are.

Paulette  15:37  
And does he have a zipper scar or what is his Yeah? So

Amy  15:41  
he has the incision scar, and then he has the three spots where his stints were, yeah, and that's what's left.

Paulette  15:50  
I think I told you, my daughter's 19. Now there's no real evidence of those stints anymore, wow. So let's we'll see what it looks like. And so you get to bring him home, and then he's good,

Amy  16:03  
yeah, so, and then he's going to have a cardiologist for the rest of his life and follow up appointments. When they sent us home, he still had a speeches, and they had to show up a week later to have those removed. At that point they had already embedded skin, so they had to, like, really cut them out. It was a very uncomfortable process, but they did scan and said everything was good. We had a six month fall out, and they said there's a slight narrowing of a pulmonary artery, but that's the expected, because we have to stretch it position, but that otherwise happy and healthy regular guy

Paulette  16:37  
amazing. And so he What does he continue to need a cardiologist or just make sure everything grows in our way? Yeah, so, I

Amy  16:46  
mean, with any congenital heart defect, there's always a possibility that things can change. Children grow so quickly, and his biggest risk factor will likely be blood pressure and making sure that his arteries remain and uninhibited, and thankfully, for a lot of these issues, it can be managed without surgical reintervention, it can be used with the catheter, so that's at least a bonus for us, yeah, but that's not the case for everyone who has congenital heart disease, just because it is such an such an umbrella of problems. Some children need ongoing medication. We are not one of those people, and I realize my my privilege, and I'm the luckiest, unlucky person in the world. Out of all of the heart defects out there, we got one that's fairly easily manageable, that requires not a lot of reintervention. And if my if what I'm good at is research and teaching, I want to be able to teach other people that this is a possibility out there, that these heart defects do go missed. And you ask your sonographer, are my babies pictures of their heart? Are they clear? And have you taken a look in all of the views? If that helps to catch more defects? Absolutely, I'm going to teach parents that this is important and that you should be advocating for your child, because it's never too early to start advocating for your child, and until you know that this is a possibility, you just don't know. It's pretty wild how, how many different things can go wrong with the heart. I mean, I think a lot of people, me included, you have this idea that, okay, once you make it past that 12 week point where that mischaracterist is gone, then you're free to go. But there are other things that can happen, yeah, and especially when one in 100 is very common,

Paulette  18:49  
Yep, yeah. Of all birth defects, heart defects are most common. As Amy mentions, the fetal heart is forming over the first and second trimester, and many fish includes development. Defects are complicated results of genetics, environmental influences and other factors yet to be clearly defined, but 75% of these defects do not require surgical intervention, so while on paper, 1% of all births are about 40,000 in the US every year is kind of a big number. The majority of them are conditions to be mindful of, but do not require the kind of surgery that Amy is talking about. Both Amy and I fell into the 25% bucket in which surgical intervention was needed, and we both had great outcomes, which, of course, is not to say that's always the way it goes. I think we both think we were really lucky. Early detection is important. So you can come up with a management plan.

Amy  19:54  
My friend Lindsay, who I mentioned, had the sun with with two heart transplants. She started her own charity because you feel so helpless in the hospital, sitting watching your child fight to survive. She started this charity called big gifts for little lives, that funds pediatric heart transplant research, and so all of her money that she raises, she funds right back into research that we can work to keep these transplants and these gifts working for as long as possible.

Paulette  20:26  
Yeah, that sounds like an amazing charity. That sounds like a great way to spend your time. For sure,

Amy  20:30  
when you're hit with something this life changing, you're looking for a way to do something, to be proactive for myself, it's speaking out and making people know that this is a possibility and how to advocate for your child, and trying to figure out ways that we can support sonographers, etc, etc. For you, you're doing a podcast, teaching people for others. It's setting up charities, and again, it's we're all regular people.

Paulette  21:02  
How old is he now? Oh, fun, nice. Where's one year old tricks right? Now,

Amy  21:11  
he is a hefty man with a strong interest in figuring out how things work. If he sees a screw or a bolt on anything, He will thoroughly investigate it. He actually unscrewed a dummy screw from his crib one time somehow. But he's crawling around, and he's pushing chairs around the house. He's not yet walking on his own, but he's getting the idea that that might be something that he would enjoy doing in the future.

Paulette  21:37  
Yeah. Maybe appreciate this while you have it,

Amy  21:39  
yeah, I'm not going to be able to keep up with him. I'm pretty sure that's super cute. Yeah, and that we just had, we had him immunized a couple or about a week ago, and they were happy with this progress. He's yelling mama at me all the time whenever she wants anything, so that's cute. He understands what's going on. He will give you a kiss if you ask for one, which I absolutely adore. Yeah, he seems to be a regular guy. How

Paulette  22:09  
is his big sister with him? She enjoying having a baby.

Amy  22:13  
She does. She tells him very frequently that she loves him, although sometimes he does want some space, which I think is absolutely normal, but she has this overwhelming drive to keep him safe, and she will alert you if he is doing absolutely anything that could be in the tiniest bit risky. Oh, my God, he's climbing up on something and like, I know I can see him, and she's holding onto his ankle to prevent him from getting any higher so that she can feel safe. Yeah.

Paulette  22:42  
So you may have to break free to start walking around with who said that there's a dog for her leg. Really interesting. And she said the walk in is, if you do walk in emergency care, it's, what is it, if anything? Because she

Unknown Speaker  23:03  
has my childhood stature and he has my

Paulette  23:09  
adult stature. It will be interesting to see. How is this animal Adobe Animal Hospital in Los Angeles. Okay, sorry, so Wow.

Amy  23:20  
I myself am five foot nine, so we may have some very dolls.

Paulette  23:25  
You got some dolls. It's well done. Thank you that that sounds awesome. Thank you so much for coming on the show. I totally appreciate your story. Thank

Amy  23:33  
you for having me and any opportunity to raise awareness about a very common heart defect. I mean, absolutely, I'll take it. So thank you for helping us to reach our emergency

Paulette  23:46  
operator. Thanks so much to Amy for sharing her amazing story of resilience, both for her and her partner and for her newborn. Stories like this are always particularly inspiring because they showcase race under pressure and the ability to adapt to the surprises that can develop in pregnancy. She and her partner were, as she says, very lucky to be, and there is a right and wrong hospital for these kinds of issues. It sounds like we had great medical care, but it's hard to articulate how wearing it is to wait a life or death surgery when you just deliver a baby and thrilling to hear of a success, while it happens. Thanks for listening. Please share this episode with anyone in your life, do you think needs to hear this kind of overcoming. We'll be back next week with another inspiring story.

Transcribed by https://otter.ai