#231 | Heart Moms: One Mother's Journey with Congenital Trans-Position of the Great Arteries

September 20, 2023

Jo Young is a "heart mom" from the U.K. Being a heart mom indicates belonging to a community of parents whose children are born with congenital heart defects.

The pivotal moment in Jo's story began at her twenty-week anatomy scan with her husband. It was here that they received the life-altering revelation that their baby girl bore a congenital heart defect requiring immediate postpartum surgery. This condition, known as "transposition of the great arteries" (TGA), unveils a complex anomaly where the aorta attaches to the right side of the heart while the pulmonary artery attaches to the left. This incongruity disrupts the circulation of oxygenated blood within the body. Notably, TGA affects only one in every four thousand live births and often eludes detection during pregnancy.

Jo's narrative unfolds as she recounts the poignant moment when her plans for a home birth dissolved into the stark reality of laboring within the confines of an ambulance. She describes her postpartum moments of cradling her newborn daughter before relinquishing her to the surgical team, and delves into the trials and tribulations of the breastfeeding journey, underscoring the indomitable spirit that she, her partner, and their resilient baby summoned to surmount these challenges.

Jo's story is a beacon of encouragement and a wellspring of inspiration for families navigating the turbulent waters of heart parenthood. Through her compelling narrative, she extends a comforting hand to reassure others of the unwavering support within the heart community. Furthermore, she highlights the remarkable strength and resilience that reside within the spirit and character of these special infants. Join us for a stirring conversation that sheds light on the power of love, hope, and strength in the face of adversity.

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View Episode Transcript

I'm Cynthia Overgard, owner of HypnoBirthing of Connecticut, childbirth advocate and postpartum support specialist. And I'm Trisha Ludwig, certified nurse midwife and international board certified lactation consultant. And this is the Down To Birth Podcast. Childbirth is something we're made to do. But how do we have our safest and most satisfying experience in today's medical culture? Let's dispel the myths and get down to birth.

Jo Young
And then it came to day 10, where she was actually going to go in for her switch, which is what they call the procedure where they switch around the aorta and the artery. That by this point she had really started to decline. She was yellow where she had had jaundice. She was on a CPAP breathing machine, she needed oxygen, her heart rate was so going so fast. I think at one point, she was sort of going 213 beats per minute, she was getting really poorly and getting really weak, and they called in an emergency surgeon.

Jo Young
Hello, my name is Joe. I am a heart parent. And I'm here to share my journey of finding out that my unborn baby had a heart defect and then the following journey through pregnancy and postpartum.

Trisha Ludwig
You said you're a heart parent. What Yes, that is a term for parents of babies who are born with heart conditions, I assume.

Jo Young
Yes, it was a label that I had never heard of before. And it's probably one that you don't want to have. But once you have that label, and you meet that community, it's a community that you'd never be without, they are such a massive support. And when we found out that daughter had a birth defect, turning to that community online, was just a lifesaver. Really, it helped us realize that we weren't alone and that there was light at the end of the tunnel for our journey. And that's why it's so important for me to share our story because I hope that it reached somebody who might be in a similar position as I was in and they can hear a positive story because although it sounds a bit scary, I still think of our story as positive because our daughter is here. She's nine and a half months old and she's healthy. So yeah, just want to let people know that. Even though the journey is Rocky, you can get

Cynthia Overgard
your pregnant with your first baby started with pregnancy with the understanding that everything was fine. Yes. And what happens next, and when did it happen?

Jo Young
So everything was going along fine. I found out that I was rhesus negative, I had a bit of anemia, this morning sickness kind of normal things that are to be expected. And then we went to our 20 week scan on the hopes that we'd find out the gender of the baby. And I had no idea that that was an anomaly scan. So it would take a really long time for them to check everything and they couldn't actually finish the scan, they were 45 minutes in and baby wasn't in the right position. They couldn't tell us if it was a boy or a girl. And the snowball effect said I've looked at everything quickly. It all looks fine, but I can't quite see the heart and I can't see the spine. So you'll have to come back again. And we'll have another look. So two weeks later, I went back on my own my partner was at work. And that spent a different snuck for told us straightaway we're having a girl, which I was really happy about. But then she paused while she was checking the heart and said there's a shape that I'm looking for. And I can't see it. And I don't know whether that's just because I can't see it or if it's not there. And if it's not there. I don't know what the significance of that is you're going to have to go to the fetal medicine unit in Bristol and have another scan. Bristol still in the southwest of the UK, but it's a different county it's over 120 miles away. So we had to drive up to go to the fetal medicine unit. And that's when we were told that our baby at 22 weeks had a major heart defect called transposition of the greater arteries, which meant that her pulmonary artery and her aorta were transposed. And that without open heart surgery, within a few days of being born, she wouldn't make it they were reversed. So no oxygenated blood would be sent around her body it was just in a circuit going back from her heart to her lungs, her heart to her lungs. So she would need to have what's called a switch where they would cut those valves and and switch them around so that everything was plugged in the right way, which they made it sound quite simple, but it's definitely quite good. scary to think about and even though we were told it was a 90% success rate as a new first Mum, you can't help but focus on that. 10%. So it's just not

Cynthia Overgard
high enough. Let me ask you something, um, with that condition, and the necessity to have surgery right after the baby is born, what is sustaining the baby in utero?

Jo Young
So yeah, good question. We asked that ourselves. And we were told that while she was inside me, or while any baby with that condition is inside their mother, they are completely safe, because they are essentially breathing through the placenta. And they have everything inside that they need to keep them healthy to keep them alive. And while she's in, she's completely safe, right? Because

Trisha Ludwig
the placenta is providing all the circulation in the lungs aren't in use yet. Really? Yeah, that pulmonary circulation doesn't start until after birth.

Jo Young
Yeah, the problem would start we were told as soon as she tried to take her first breath. And we were sort of warned that she would come out not being able to breathe and that she would be blue. And she'd need straightaway, a procedure called an arterial tossed me, which is where they essentially would make the hole that was in her heart because she had two holes as well, an ASD and VSD, they go into her heart with the catheter, blow up, like a balloon, and then rip the heart the hole and make it bigger, backwards and forwards so that the blood would mix. And then they'd sustain that with a drug called Croston, which would keep the hole open until her open heart surgery. So that was the plan. But actually, she came out pink, and she was breathing. So she didn't need that surgery straightaway. So we were very lucky. Did

Cynthia Overgard
she come up pink and breathing because she was still attached to the placenta and getting her oxygen that way?

Jo Young
No, I think in some cases, you just are very lucky. And with us, my daughter Malia when she she came out, I could hear her crying straight away before I'd fully actually given birth to her. And she was sort of halfway out, I could hear her crying. And then that allowed me to then have 60 seconds with her on my chest, which I did not think I was going to have. So that was also amazing.

Trisha Ludwig
I imagine that and things changed like this. She came out and she was breathing in. That was amazing. And you've got this first beautiful minute with her where everything was working properly. But of course that wasn't sustainable with her condition. So we want to hear about that. Yeah, so about anything more in your in the pregnancy and the birth process in the in the planning and the support you got or didn't get.

Jo Young
Yeah, I mean, we were, we were very supported by the hospital both locally to us. But we live in Plymouth, but also the hospital on Bristol. Because we were planning on sort of as natural birth as possible. If that's the correct term, I wanted to be at home, I wanted to have a water birth I wanted. I didn't really want any intervention. And then to be told that you're 22 weeks scan, you need to give birth in a hospital in a different county from you need to be induced because you need to be in the right place. There needs to be space in the NICU for your baby. It felt like that was completely taken out of my hands. But I appreciate and understand that that was the path that we needed to follow in order to keep our daughter alive. So I did lots of HypnoBirthing I read up about about positive inductions. And I felt that I was quite prepped that way. But then three days before her induction she decided that she was going to come early anyway. So is good as that was for me because I was a little bit nervous about being induced it meant that we weren't in the right place. So I had to be blue lighted by an ambulance from where we live in Plymouth to Bristol. My partner was unable to come with us. So he was stuck in the car on the motorway in a massive traffic accident while I was laboring in the heatwave last last September, so by myself in the back of the ambulance and hadn't had any pain, really. And I was thinking that things were quite intense. But nobody was really checking me because I was only one centimeter dilated when I left the hospital. Four hours later, when we got to Bristol. I could just my body just started pushing. And I remember asking for the epidural and just feeling this real moment of panic and the midwives are sort of looking at each other like oh, you know, you can't have the material yet. You need to wait until you're four centimeters. And then I was like no, I'm actually I'm pushing, I'm pushing and they checked me and they're like, Oh no 10 centimeters. Just go with your body. So I dilated from one to 10 in less than five hours.

Trisha Ludwig
Oh was the back of an ambulance?

Jo Young
Yeah, it's, um, it was quite dramatic. But at the same time, I feel like I stayed quite calm. I didn't want to panic. And I didn't want her to come out before we got to the hospital. So she came just in time and my partner arrives just in time to be there. We've very nearly had a emergency C section because her heart kept dropping. Because I don't think, well, actually, no, I know, I wasn't pushing as much as I should have been pushing because I didn't want her to come out. There was a moment when my brain suddenly went, Oh, once your baby comes out, she's going to be in trouble. She's going to be fighting her life, she's going to be taken away from you. I don't want her to come out anymore. So I was almost deliberately trying to keep her inside. Because I knew that she'd be safe. And then when they press the emergency button, and everybody came in, and they started prepping me, I was like, no, okay, I need to, I will do this, I can do this, please let me do this. Because I knew that vaginal birth was the best outcome for her because I was told that it would squeeze more fluid out of her lungs as she came down the birth canal. And also, for my recovery. I knew that we would be in hospital, we were told for up to four to 12 weeks, we could be away from home, and there'd be lots of sleeping in hospital chairs and stood over her bed. So I wanted to make sure that I could do that. So

Cynthia Overgard
I want to just jump in. I have never here in the US heard of a single woman report that her provider said a vaginal birth will be important here in your case. You're the first time I've heard any woman say that? And it's okay. Yeah, they don't say that here. It's always I mean, I really think I mean, I don't know if you've connected with women with heart, mothers in the US. But I would venture to guess that they're usually told we need to schedule a C section. So I I'm very happy to hear that they said that. And I'm happy that they were informed and said, well, here are the benefits of a vaginal birth. We never hear that over here.

Jo Young
Yeah, no, I haven't I haven't connected with any US mums. Actually, that's something I'd like to outreach and do. But um, we were the ones pushing for a C section towards the end, because we thought but that's all of this is completely out of our control, a C section we can control. We know when it would happen, she'd be out quickly, this is what we want to do. And it was the hospital that was pushing back at us saying no natural, natural. And now I'm so glad that we did because if my labor I think was was amazing. Although there was a lot of stressful situations going on actually, giving birth to my daughter was probably the easiest part of this whole journey. And I'm so glad we did it that way. Because also seeing just how much we had to do. For her care. I couldn't have done that if I'd had a C section because my partner would also need would need to be looking after me as well as our daughter, it just would have been very complicated. So I'm I'm so happy things worked out the way they did. So when Malia was born and she'd had 60 seconds together on my test, she then got taken away to the NICU straightaway. And my partner and I had already discussed that he was going to go with her. I didn't know how I was going to feel after giving birth, but I felt I was going to be okay by myself. So he went off with her. And I delivered my placenta and I had I was looked at by the doctor and then the doctor and the midwife left. I was left on my own for about 40 minutes. And I'm not quite sure if that was meant to happen or if anybody knew I was on my own. But I was I didn't have a buzzer. There was no way of me getting up. I was still covered in the towel I just given birth and I was just sort of lying there for 14 minutes wondering what was going on. But she then came back 40 minutes later and helped me have a bath and then my partner came back and showing me pictures of our daughter in the NICU. And I was allowed to pull down to see her if I'd eaten some toast and had a cup of tea. So I did. And then we went into the NICU and I remember it was really dark in there and very hot and I got about two meters away from seeing my daughter. I could see that somebody was working on her and she had had lots of wires put in and they were doing an echo gram of her heart. And then I went very funny I I couldn't feel my hands. I couldn't feel my feet. I had really heavy hands and feet. It felt like pins and needles were going through me I couldn't breathe. I had to be then taken back up to the maternity unit where I was told that I was really dehydrated because I hadn't had any fluids for about eight hours and labored in the back of a very hot buttons.

Cynthia Overgard
Can that have the effect of heavy hands and feet like that?

Jo Young
Simply but I think it was more. They said that it also had carbon dioxide in my blood which could have had I've been through hyperventilating. And then they did an ECG on me. And the doctor thought that I had a heart murmur, which was news to me. So all this information was kind of coming at me while I was in a separate building to my baby, because at that point, she had been taken down to the children's hospital in an ambulance with my partner. So I was having to stay hooked up to a drip. In the hospital where I just given birth.

Cynthia Overgard
What did that feel like, is

Jo Young
really hard to put into words, it felt like someone had without sounding too depressing. It just felt like someone had ripped my heart out. And they had just run away with it, and had just taken it away from me, I just felt so empty, because my belly was empty, I kept feeling my stomach to just make sure she wasn't in there anymore. It's like, I couldn't believe what had happened. But my arms were also empty, and I didn't have her and just that instinct of just needing to be with her and hold her and smell. I didn't even know what she really looked like properly. And that whole night, just being by myself without her was so strange. And then the next day, it took them 12 hours before they discharged me. So I hadn't seen her for 29 hours since giving birth to her. And it was awful. My partner kept having to come up the hill from the hospital where she was and collect colostrum from me which I was squeezing into a syringe, and then he'd go back down and feed that to her. And it was stressful.

Trisha Ludwig
We can't We can't underestimate the emotional toll of what you were experiencing, you knew this was coming, you had this anticipation. And when your baby was taken from you, you knew all these things that could be going wrong. And so what you were feeling, I'm sure in your hands, your feet, your chest, was connected to those emotions. But, you know, there were other factors at play, too.

Jo Young
Yeah, definitely. I did have a really lovely labor bag prepared, actually, with all of my treats, and all of my candles and incense, and every everything that I possibly could have needed for a relaxing experience. But it was stuck in the motorway A couple of miles back with my partner, so I never got to see that. Yeah, but the next day, I was begging to be discharged. And by the time it got to six o'clock in the evening, I finally got my paperwork. And they wanted the hospital wanted to call me a taxi or wait for someone to wheel me down in a wheelchair because the hill from where I the hospital I was in to the Children's Hospital is. It's the steepest Hill I've ever seen in my life. And I just didn't want to wait. So I just marched down to see her and I was wearing shorts. And I got there and I could just feel the blood just coming out of my shorts. And I regretted that the next

Cynthia Overgard
day, you walk? Well, okay, that's I

Jo Young
could have waited, I think I could have waited, but I just didn't want to wait, I just was in full mama mode. I just wanted to be with my baby. I didn't want to wait any more. And I just, I just went and I probably shouldn't have done because it made my recovery. A lot harder than maybe it needed to be I had quite a few stitches, which I had torn and yeah, quite a lot of pain. And then I got to go in and see her in the pediatric intensive care unit in the PICU. And that was the first time I really got to take her in and see what she looks like and hold her hand and navigate sort of through all the wires and the tubes and everything and meet the nurses who had essentially been her mum for the past 24 hours they had changed her and washed her and had done all the things that she needed doing. So it's an emotional moment that I was really happy, obviously to see her. But yeah, we couldn't then stay with her each night. So every night we had to say goodbye to her and leave her there. But she looked really well at this point. And this is what I'm so grateful that her defect was picked up at my 20 week scan because if we didn't know and only 50% of cases are picked up early before the baby's born. If we didn't know we would have just taken her home and then she would have deteriorated quite quickly. So we're very, very lucky. And her open heart surgery was scheduled for five days time so we called all our family they all came up to see her and everything was kind of on track but then they did a routine X ray and discovered that she had something called neck necrotizing endo colitis, which is where part of her bowel was dying. And they had to immediately stop all of her feed she had to go on Triple antibiotics. They said that they could not do her surgery until the neck had been fixed because doing this her open heart surgery would mean stopping her heart which meant obviously no blood is going around her body which was doesn't mean that no blood was going to her to her tummy. And if that happened, I was told it could result in a stoma bag, or it could be life threatening. So they had to get on top of the neck first. So she had five days of not being fed antibiotics. And she she cleared it.

Cynthia Overgard
How did they feel?

Jo Young
So she was on a almost a formula called TPN, which had all of the nutrition and everything that she needed to be in to keep her sort of hydrated. But

Cynthia Overgard
was it intravenous? Yeah, yeah. Yes, it

Jo Young
was. Yeah, it is via a drip. And then, when she came off that I was able to give her bits of colostrum. Again, she had an NG tube. So she was being fed through her nose, I was trying to pump at the same time, all of her feeds had to be measured, so I wasn't allowed to breast feed her. And I was really struggling with that because no milk was coming out, I thought it would happen straightaway that it took me up to day eight, I think before any milk came. So I was just having to sit in another room really in the family room with my electric pump trying to harvest as much colostrum as I could. And at nighttime, I had to sort of set my alarm, walk across and then pump or pump in the hotel room that we were in. And yeah, when when my milk finally came through, it was an amazing feeling. That by that point, they were then prepping her for her surgery, because she was having her open heart surgery on day 10. So we didn't really get to give her too much of my breast smell, but she'd had colostrum and they'd use that for sort of eye care and mouth care. And, and then it came to day 10, where she was actually going to go in for her switch, which is what they call the procedure where they switch around the aorta. And the artery

Trisha Ludwig
was she also being fed donated breast milk, or colostrum, or formula.

Jo Young
It was only my colostrum. And actually, for the first 48 hours, maybe she wasn't having anything because I couldn't really get that much out. I managed to harvest some colostrum just after I. I had her but it wasn't very much.

Trisha Ludwig
I'm only asking because it's interesting because if you were having a hard time getting your milk to come in, you were producing a copious amount of colostrum. She wasn't breastfeeding in the United States, those baby a baby would be on formula so fast. My so okay, they, they were willing to just forego formula or donated milk and just give her everything that was your own?

Jo Young
Yep, yeah, it was just, we were told her tummy was so small, that just little bits of colostrum would be enough to sustain her better. So

Cynthia Overgard
we don't hear that enough over here that his stomachs are disproportionately small to their bodies, as compared to how their stomachs are gonna be in relation to their bodies, the rest of their lives, they're really tiny. And colostrum is enough. That's it's just so fascinating to hear stories like this from someone outside of the US, because we just, it's just such a good reminder to our listeners that so much of what we view as normal, and or unnecessary, is simply cultural. So our country would handle so many of these things differently, which only shows that, you know, they can't both be right. Yeah. So really interesting. All right. So what happened next, she had her surgery on day 10. So tell us about that.

Jo Young
Yeah, we had a call to say that her surgery was going to go ahead because they initially wanted to do the arterial septostomy. And wait a bit longer because it was a bank holiday over here. Because the Queen passed away. We had a bank holiday to commemorate that, which then meant that there just weren't any surgeons around that were going to be able to do the surgery. So they were delaying that until there was the right amount of people to safely do her procedure, that by this point, she had really started to decline. She was yellow where she had had jaundice. She was on CPAP breathing machine, she needed oxygen, her heart rate was so going so fast. I think at one point, she was sort of going 213 beats per minute, she was getting really poorly getting really weak. And they called in an emergency surgeon who came to see us that morning, we have to sign the paperwork. But I gave my partner the paperwork to sign I couldn't do it because you saw all of the side effects of possible things that could go wrong. And when you see seizure and cardiac arrest and death and like acknowledged that these could be the outcome. I just couldn't process that. So he signed the paperwork and we kissed her goodbye and she got wheeled away and And then I remember calling out to the nursing, can you please bring me back her blanket because I need something to smell to be able to continue to express while she's not near me. And she came back with her blanket and her teddy and we just walked around the city for a couple of hours, just crying. Really, we went back to our room in the charity accommodation that we were in, we tried to sleep but we couldn't. We tried to eat but we couldn't. We tried to watch TV, but we couldn't. And then the call came Seven hours later to say that she was critical but stable. The surgery had gone. Well, she had been put onto a pacemaker at one point in the surgery. But everything had gone as it should. And actually, they were able to close her chest fully, because normally they have to leave the chests open because of swelling, but hers was able to close. So it was quite a straightforward operation. And then after that, we got to go and see her. She was kind of she was drowsy. But one of her eyes was kind of half open. And she was making really like grunting glow noises it was, it was sad to see and it was quite scary because she had sort of chest drains coming out of her, which were emptying all of the blood like into tubs next to her on the bed. But I was so happy for the first time I actually felt relieved that it was done. And I knew her heart was fixed. And I knew that the road was still going to be bumpy. But I she survived the surgery. So now we just had to get through the recovery. So that was kind of a bittersweet moment. And that night was quite scary. They told us it could be rocky the first night, but um, she did well. And it was only it was two days later, she got moved to a different part of the hospital out of the PICU. And it was in there that she then went into an episode of svt, which was when her heart essentially ticked into a different rhythm. And rather than going around all four chambers, it was just going backwards and forwards backwards and forwards across two of them. And it went up to 256 beats per minute. And that was scary. So I had no idea what was going on. I thought she was having a heart attack the room just filled with people and they were putting ice all over her head to try and bring her heart rate back down. And in the end, they injected her with something I can't remember what it was, but they managed to stabilize her.

Cynthia Overgard
That's terrifying. This is terrifying stuff. I mean, you had to feel like you were in a state of shock half the time in disbelief.

Jo Young
Yeah. And we were told that 80% of babies grow out of it within the first year of their life. But she was given Pannon Reylo, which we have to give to her three times a day. And we were also given stethoscope training. So we have to listen into her heart four times a day to make sure that it hasn't gone fast again. So we're in the habit of doing that. Now. It's harder now she's a bit bigger, and she's a bit wiggly, but we can usually tell within a couple of seconds whether her heart is okay or not. And so far Touchwood it's all it's all been fine.

Cynthia Overgard
So when you in, in the beginning of the episode you mentioned She's totally fine. And she is Thank goodness. But she's living on medication right now. And we'll show you the rest of her life. Is that part of this?

Jo Young
She has come she came off the medication a month ago, but they weren't going to keep it going for a year. And depending on whether she outgrows SVT or not would determine whether she needs to be on the medication for life or not. I understand. Yeah. So because of all the medications that she's been on, she has had a lot of tummy issues as well. And we've really struggled with feeding and that's been a whole that's a whole other whole other part of the journey, which has been quite tricky. But yeah, she's if you were to look at her now you wouldn't know she's the most fiery, passionate, lively baby you could ever meet.

Cynthia Overgard
Do they know why this happens to some babies in utero? And how common is it? Do they know how frequently this occurs?

Jo Young
So in the UK, one in 125 Babies are diagnosed with a congenital heart defect. transposition of the great arteries I think makes up about 10% of that. They don't know why it happens. I was told when we were diagnosed that there was nothing that I did that caused it and there was nothing that I could have done to have made it better. We signed up at the hospital to be part of a trial group. So one of the doctors was running a trial to see if he could find any possible causes or links to this defect. It's not hereditary. So he took my blood sample my partner's blood sample urine samples, he took blood from the umbilical chord when my daughter was born, and we're going to be checking in with him sort of every couple of years for the rest of our life, really just to see if anything has changed in any way to help his research. Yeah, if we can help in any way, then we want to. And we're just very lucky that this surgery is technically quite a straightforward one, compared to other heart defects that you can have. But if she had come 20 years ago, it would be very different. It's only something that they've sort of said that they have really mastered in the last 20 years.

Trisha Ludwig
It's really, really remarkable what they can do. And sometimes the surgeries are even performed. I don't know if this specific surgery, but some of these heart surgeries are performed in utero. Yeah, while babies while mothers are still pregnant, it's just incredible what we can do. And because now her heart anatomy is corrected, does she have any physical limitations or restrictions or activity levels for her life just expected to be absolutely normal.

Jo Young
Um, I think it's as normal as sort of expected, it's, she has to be careful not to get too hot, she also has to be careful if she goes swimming, not to get too cold. She's not allowed to get any tattoos or ear piercings. And we have to be really careful with dental hygiene because of the increased risk of endocarditis, which is where bacteria can get into the heart. Yeah, we have to tell her that she'll be able to hear so it is or have a tattoo. So

Cynthia Overgard
are all infections of risk to her? Or is this something specific to ear piercing?

Jo Young
I think those in particular were mentioned to us because of the risk of endocarditis, but I think in particular, we do have to be a bit more careful. And then you would do maybe with a healthy baby. If she got poorly, then she could get more poorly than another child. So we were quite isolated with for the first couple of months, we didn't really go out anywhere. And if people came over, we were really strict about please don't come if you're poorly, please wear a mask, please wash your hands, please do a COVID test if you don't feel very well. And we've only just started taking her to baby groups to sort of let her then build up her immune system now that she's that much older him we're in the summertime over here as well. So it's just sort of decreases that risk of her getting too sick costs you so

Trisha Ludwig
is the heart community that you mentioned? Is that a worldwide organization? Or? Like is it more in the UK? Can you tell us a little bit more about that?

Jo Young
Yeah, so the group that I initially became a part of was through a Facebook group, which was heart parents in the southwest of the UK. But there are charities which are a bit more global, but it's mainly UK based support systems that we've been accessing. And we've been raising money for a small charity called Tiny tickers, which again, is UK based and all the money that they receive goes towards trainings and ographers to detect defects in utero. So that was a really important charity for us. So we've been walking lots of miles to raise money for those as well.

Cynthia Overgard
Tell us why it feels so important to share your story. For me, it

Jo Young
was so helpful hearing stories with good outcomes. It was a lifeline throughout my pregnancy, it was something that I could cling on to and hold on to it on the days where it felt like everything was falling apart, just knowing that someone else's story and what they've been through, and that they'd come out the other side, I thought, right, okay, if, if they can help me that way, then I'd like to help someone else if they've also been diagnosed or had a baby that's been diagnosed with a congenital heart defect that you know, it's scary, but you can you do get through it, you will get through it. And I guess as well, I'm just I'm so proud of my baby, um, everything that she's been through. She's such a fighter and I just want people to know, and I know our story isn't sort of perfect, but to me, it's amazing. And it's just such a testament to her and how strong she is. And if you're going through the journey of being pregnant to a baby with a heart problem, or if you're a heart mum or heart, dad, grieve the losses but celebrate the victories. Explore your grief, express it, don't push it down and just know that there is light at the end of the tunnel and you will get there and cardiac babies are warriors. They really are that the strongest little babies you'll ever meet.

Thank you for joining us at the Down To Birth Show. You can reach us @downtobirthshow on Instagram or email us at Contact@DownToBirthShow.com. All of Cynthia’s classes and Trisha’s breastfeeding services are offered live online, serving women and couples everywhere. Please remember this information is made available to you for educational and informational purposes only. It is in no way a substitute for medical advice. For our full disclaimer visit downtobirthshow.com/disclaimer. Thanks for tuning in, and as always, hear everyone and listen to yourself.

Trisha Ludwig
your story is one of the reasons that we we talk a lot about ultrasounds and choosing ultrasound or not choosing ultrasound on the podcast but the anatomy scan is an important one for reasons like this, and I know that they're not all picked up. But but not knowing something like that. And having a birth far away from a hospital. Could have been very different outcome.

Jo Young
Oh absolutely.

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About Cynthia Overgard

Cynthia is a published writer, advocate, childbirth educator and postpartum support specialist in prenatal/postpartum healthcare and has served thousands of clients since 2007. 

About Trisha Ludwig

Trisha is a Yale-educated Certified Nurse Midwife and International Board Certified Lactation Counselor. She has worked in women's health for more than 15 years.

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