SPEAKER_01 0:16

Hi, I'm Maeda and this is Raising with the Fiddle, a podcast where real parents share real stories so we can all feel a little more connected in this wild journey of raising children. Before we begin, I want to take a moment to let you know that in today's episode we touch on pregnancy loss. So please be gentle with yourself as you listen and know that it's okay to come back to this one when the time feels right. Some stories stay with you long after the recording ends. Anita's is one of them. If you were with us in episode 7, you already know Anita. She came on to share her birth experiences, an elective and an emergency C-section with an honesty and a warmth that many of you connected with. And at the end of that episode, she mentioned, or almost quietly, that her daughter had been born with a lung defect. Today, she comes back to tell us the rest of the story. What happened during the pregnancy when they found out, what the months that followed looked like, the appointments, the scans, the hospital visits, the waiting. The kind of waiting that sits in your chest and doesn't leave. And then the surgery. All of this in her daughter's first year and a half of life. But before we get there, Anita opens up about something else. Something she carries that many parents carry quietly and alone. The loss of a pregnancy, and she speaks about it with courage and tenderness that I think will mean a great deal to anyone who's been there. This episode is Anita's story. But it's also the story of every parent who has sat in a hospital corridor wheeling their baby through something no baby should ever have to go through. Every parent who has learnt a language that they never wanted to learn. The language of wards, of consultants, and surgeries, and hope. Because while every diagnosis is different, that feeling of loving someone so completely and being unable to protect them is universal. This is a big one.

SPEAKER_02 2:35

Have a cup of tea. And if you need to pose, please do. Here is Anita. Hi. How are you? Good, thank you.

SPEAKER_01 2:46

Good. How are you? I am I'm good, thanks. I'm good. Sounded like I was waiting for you to say, how are you? I am good, thank you. I'm glad you're well. Right. So do you want to introduce yourself?

SPEAKER_00 3:00

Yes. Um my name's Anita. I am a mom to two children. Um my eldest is three and a half, and my youngest is my eldest is three and a half years old, and my youngest is three and a half months old.

unknown 3:14

Yes.

SPEAKER_01 3:15

Oh, and your voice may sound familiar to the loyal listeners. Um, all of you, my villagers, um, because you've shared your story before. You've shared a story before, and you're coming back to go a little bit deeper into your story, I guess.

SPEAKER_00 3:38

Yes. Um, so I shared my story um on my emergency c-section, and my second birth was an elective c-section. Um, and I mentioned for the emergency C-section that I was induced and why I was induced before the C-section, but I never actually went into the detail of why an induction was required for the birth of my daughter and and why I ended up having an emergency. I think I I did talk about why I ended up having an emergency C-section. Um, I didn't go into detail why I was induced and it was a failed induction. I mentioned that she had a lung defect. Um, so I'm here to share the story of her lung defect and what happened during my pregnancy and what happened after.

SPEAKER_01 4:24

Perfect. And can I ask you why you've contacted me to share this part of your story?

SPEAKER_00 4:32

Um, I think it's probably about time for me to share this for my own benefits and so I can talk about it because I I do tell friends about this, but I haven't really gone into details, mainly because I don't know the medical terms anyway, um, and mainly to raise awareness of the situation that she was in, um, because it it's probably more common than we think.

SPEAKER_01 5:04

Sounds good. Perfect. So let's go back to the start of your story. And for um people that want to know about the whole C-section story, elective C-section versus um emergency C-section, you can go back to episode seven, uh, where Anita shares her story. But for today, let's go back to the start of your story. So we're talking here about your first pregnancy with your daughter. So tell me again, um, how did the pregnancy begin?

SPEAKER_00 5:37

Um, so I found out I was pregnant in 2021. Um, she was born in May 2022, full term. And when I went to my 12-week scan, everything was fine. Um, at the 16 weeks routine midwife appointment, everything was fine. And it was just a few weeks before Christmas, and we wanted to have a private scan or a scan before Christmas to share that to share our pregnancy to our families because at that point we haven't told our families yet um that we were expecting a baby. And previously I had a miscarriage, so this time I was more nervous, I was quite anxious, so I didn't want to wait for the NHS 20-week scan. Hence, we had a private scan before Christmas, and so we can get some photos to show the families. So we had a private scan two weeks before, about two weeks before Christmas, and during the scan, they didn't really say much. We saw the baby, we saw the heartbeat and everything, and then we waited in the waiting room for them to bring out the um the photos for us. But instead of that, they asked if we could wait in a quiet room at the back of the of the place, of the scan place. So we thought something is wrong because why would they do that? Um so we went to the quiet room at the back and we sat down, and then someone eventually came in and said that um they saw something in a scan in the right lung that shouldn't be there, and that I need to get in touch with my hospital to find out more. And so I asked what it is. Um and they because they they're not medical professionals, so they can't really tell us exactly what it is. They just saw that they they just said that they saw something that shouldn't be there, so speak to the NHS. They actually gave us our photos for free in the end, because they felt bad for us. And they gave us a referral to NHS care provider letter thing, and on that it described the reason for referral. And actually, this is completely this is irrelevant anyway, because when I called the hospital requesting for an earlier scan, they they couldn't really do it because it was over the Christmas period, because my 20-week scan was the week after Christmas, so they couldn't really do it. They couldn't really do it, and they say you just have to wait until after Christmas for your actual scan, and they were fully buried, they're really busy, there's nothing they could do. So the private um scan company gave me this bit of paper, and I'm not going to read it out, but basically it says that there is a multi-cystic mass in the right lung. It doesn't say lung, it's say something else and in bracket lungs, so I guess that's what it means. It means lungs. So we went home really worried. Um I called the hospital to see if I can have a the 20-week scan earlier. They said I couldn't. Over Christmas, we shared the news with our families anyway, but we didn't really tell them anything about this. But we just told them that we're having a baby.

SPEAKER_01 8:58

How do you share the news with your family whilst keeping this huge information for yourself?

SPEAKER_00 9:06

So we we tr we try really hard not to think about it and overthink. Um I've obviously Googled everything to do with this and looking on social media and everything. Would you advise that? Um sorry. Would you advise that? Probably not. Did that make you need to sleep better? Well, I found the best hospital for this is in America.

SPEAKER_01 9:29

Oh, great.

SPEAKER_00 9:30

Okay. Um but I was starting to show um some of my husband actually got me a t-shirt that says it's not a food baby to wear on Christmas Day to see who noticed that my t-shirt says it's not a food baby, meaning it's an actual baby. So we shared the news that I was pregnant, but we didn't really talk about anything else. Um, we're just quite excited that everything hopefully will be fine. Then week after Christmas, we went for our scan, and that's when they confirmed that there is a mass made up of um cyst in her right lung. And so after the scan, we had to wait for the consultant to come in. And I asked the consultant, I remember asking her, do we need to terminate a pregnancy? Because I already had a miscarriage, and at this point I thought, is this the end again? Like what is what is happening? And she looked at me and said, No, no, no, no, no, we're gonna monitor you. This, you know, it's okay, we'll we will monitor you, um, and sh everything should be okay.

SPEAKER_01 10:39

Can can I ask you, sorry, um, and you tell me whether you feel comfortable um talking about that, but um would you mind telling me a little bit about your miscarriage um previous to this pregnancy?

SPEAKER_00 10:53

Um I was I was nearly 12 weeks, I was just over eleven weeks pregnant. And then um quit something. Yes, um, I just had some bleeding, went to the hospital um while I called first, and then um went to the what is it, pregnancy what did they call it? Early pregnancy unit, that's the one. Um yes. And they did a scan and said there is something there, but there's no heartbeat. And I said, Well, I'm 11 weeks pregnant, so there should be a heartbeat. And then they said, Maybe it's just not quite developed yet. Can you come back a week later? Went back a week later, oh still no heartbeat. So then we started the process of um, I think I chose the tablet to for for the miscarriage, and in the end it took about a month and a half before everything left my body. It took a while, and we went back to the hospital a few times for scans for them to check whether there was um any like tissues remaining, and yeah, so and that was May, the end of May 2021, because I remember it being a bank holiday. Um, and then they said I think wait for one period cycle before you try again, and that's what we did, and I got pregnant straight away. Okay, okay. Yeah, so the whole time I was just very anxious dance.

SPEAKER_01 12:34

I can imagine, yes, I was about to say, so you're on this new pregnancy much further along than the first time. Yeah. And thinking, is this a repeat? Is history just repeating itself?

SPEAKER_00 12:50

I thought maybe that I just could not develop a healthy baby. Yeah, so I asked whether we needed to terminate and she um reassured me that I don't have to. So so that was good. And then a week later I went back for a scan of the baby's heart. Um, his heart is completely fine because there are risks that um the mass will grow so big that it will push the heart to the other side and causes other issues as well. Um, so baby heart's okay. The mass itself is only in the bottom part of the lung. So our right lung is made up of three lobes, the left lung's made up of two, so her right lung, the bottom lobe, it's filled with um this mass. There's very little healthy tissues in that lung, in that part of the lung. So, yeah, so we had a special scan of his heart of her heart, and that was fine. And then I had another scan just to measure the size of the mass in her lung, and that was fine. Um, well not fine. They just needed to keep a measurement on it to see whether it's grown um just to check the size. So after that, we went back over three weeks um for a scan to check the size, and then they would check everything else, kidneys and whatever else, just to make sure that everything else is still f okay. Um so her conditions called CPAM, congenital pulmonary airways, malformation, CPAM. Uh and then towards the air I gave birth.

SPEAKER_01 14:39

And so so sorry, let's let's go back a little bit um to this point. So you said that you had um some tests, scans, and all, then you went away for three weeks and um had some more tests and scans happen. How do you feel in that time in between those hospital visits? Um, is my first question. My second question is Did you share anything with your family or friends at this point?

SPEAKER_00 15:10

I shared it with friends and I shared it with some of our families, not everybody. Um, how did I feel? Part of me felt very lucky to be able to have a scan and see the baby every three weeks, because as you know, after 20-week scan, you either go into labor and meet your baby, or you may, depending on the um NHS trust, depending on the hospital and depending on your risk factors, you may have another scan at 36 weeks. So part of me felt like great, I get to see the baby every three weeks. But after I've seen the baby in a scan, I would feel really relieved because they they're quite reassuring every time. But then after let's say two weeks, my final week before going for another scan, I would start to feel um anxious again that something's wrong or something's gone wrong. Um yeah.

SPEAKER_01 16:11

Was the NHS able to point you you know, towards support groups, or is is there anything that you can do to help you for those in-between times?

SPEAKER_00 16:26

Uh to be honest, I did Google a lot and I found a Facebook group of parents whose kids have this or something similar, and even people themselves that had this and either had surgery or haven't had surgery and just lived with it. Um the Facebook group is quite helpful um because most of the stories in there, they're mostly are success stories. There's a couple of them that have a sad ending, but majority of them have been um like good news. Some of them had their surgery 10 years ago, some of them haven't had surgery. Um yeah. So I found that helpful. And reading reading about it from the different hospitals' websites, I think that kind of helped as well because it talks about obviously the worst case, or it could develop to this and this and this, but every time we've gone for a scan, it hasn't developed to XYZ, it's just stayed as it is. It may have just grown along with the rest of the lung, but it hasn't caused other issues.

SPEAKER_02 17:36

Right.

SPEAKER_00 17:37

Because it could cause fluids around the heart and etc. Yeah.

SPEAKER_01 17:43

What were your doctors telling you about the life quality of your baby? What is that something they were able to talk about at this point?

SPEAKER_00 17:52

I asked about um whether she could do sport like other children, um, whether they can go scuba diving and fly, like go in an airplane and things like that. And they went, yep, everything should be as normal. Um pretty much if she had surgery, but at that point it's really hard to know until she's born to see what symptoms she's got. Um, and then surgery is also optional as well. You don't have to have the surgery, but they'll just keep monitoring you, so they'll just keep monitoring you to see whether you develop other symptoms and require surgery. Um, we chose to have surgery because it was something in her lung that shouldn't be there. So we chose to have it removed.

SPEAKER_01 18:46

Sorry, so you chose to have surgery before your baby was born? After. Oh, okay. After. Yes. Once you once they were able to assess the situation, I would assume.

SPEAKER_00 18:55

Yes. Okay. Yeah. Because the ultras can doesn't really give you that much information.

SPEAKER_01 19:01

Um and tracking, monitoring what's going on rather than actually giving you a detailed picture of the state of things.

SPEAKER_00 19:10

It's it's very difficult. Um then after she was born, she had um an x-ray. And how old was she at this point? Um a day old. Oh okay. So be f so when she thought she was still at the hospital. Because of the because I had um sepsis and hence the emergency C section. She we had to stay for a few days anyway, because she had to have um antibiotics. And the next day she had um, so the day the day after she was born, she had an X-ray, and a month and a half later she had a CT scan. Um and the CT scan then showed the doctors and us detailed images of her lung.

SPEAKER_01 19:58

Is the CT scan the one where they put the baby in the tube? Yeah. Yes. Yeah. Is that how how does that sorry, because I I don't know if people know what I'm talking about, but I've seen videos and images of that where you can see babies being sort of I don't know if they are being pushed down until No, she was lying down.

SPEAKER_00 20:17

She was lying down with some sort of materials around her. So we um and she had to have a cannula for like this dye to go in for the imaging. Um and then she went into this room and there's this huge machine where she lay down and the the bed that she was lying in, that she was lying on basically then went into the machine and went back out of the machine. She couldn't move. Um so I tried to breastfeed her to sleep, but she didn't sleep at that point. Um and they had this material that sort of like bundled her up and squished her a little bit to prevent her from moving too much, from being too wiggly. And luckily, she didn't really cry too much. She was crying from the candula, but by the time we got there, she's calmed down. And um then she went into the machine, came back out, they checked the images and said that yeah, they're good images, so then we can go, otherwise, she would have had to go back in again. Um, so that was about a month and a half. Then two weeks later, we had an another appointment um to show us the images um and basically to discuss um what we're gonna do next.

SPEAKER_01 21:35

Okay. And so at this point, what what's the discussion about? Is that at this point that you start talking about surgery?

SPEAKER_00 21:43

Um we spoke we spoke to them about surgery before before we before I gave birth. So when I was still pregnant, we had a we had a Zoom video call with Two doctors, I think, that discussed this. And they basically said that because of COVID, they had a waiting list. Um and we have to join a waiting list that's like a pediatric, um, for for the pediatric surgeons. Um, and also they needed two surgeons, two anaeticists, um, two of everything for the surgery. Hence we had to wait. And the soon the earlier she has the surgery the better. Um, it gives her it allows her time for the rest of the lung to expand to fill the void. And um, yeah, so then we were on the waiting list for surgery, and we still met the surgeon a couple of times before her actual surgery. Um yeah.

SPEAKER_01 22:51

In terms of daily life, so life outside of the hospital, what does it look like?

SPEAKER_00 22:58

To be honest, pretty normal. You can't tell. Because when she was born, she didn't have any symptoms. She didn't cry when she was born, so I was a bit worried about all that. But um but apparently that's just her, that's just her normal. But yeah, the first the first year or two years, wouldn't be able to tell. We did normal things, swimming, or the baby classes, children's centre. Yeah. What about your I don't know.

SPEAKER_01 23:31

I'm thinking about maybe anxiety or like what's it like for you as a new mum, first-time mum, to leave knowing that your baby, so little, so fragile, has to live with this condition um and will have to go through with surgery as well. What what's it like for you?

SPEAKER_00 23:55

Um I think most first-time mums have all sort of worries anyway. You know, we wake up in the middle of the night checking the baby is still breathing, checking the baby's still there. Um so I So checking the baby's still there as in I'm just it's just a job.

SPEAKER_01 24:19

Um because I run away in the middle of the night being like, we want more milk. Yeah.

SPEAKER_00 24:27

Help myself to the milk. Um Yeah, I it's difficult because I can't compare um that with another first-time mum. I can't compare what it would be like. So I was worried and I remember when she whenever she got sick, you just naturally you're naturally worried anyway. So I don't it's hard to say whether I was more worried or less worried. Um yeah, the most important thing for us was that she she was healthy most of the time. And also I thought if it's urgent, they would bring her up to have the surgery soon. And because it's not urgent, because she's actually fine, we can have the surgery a little later when she's a bit older and not when she's a few months old.

SPEAKER_01 25:16

Yeah. Very fair in point. Okay, so I think that where we left the story off is that you were getting ready for your surgery. So how old was she in the end when she had her surgery?

SPEAKER_00 25:26

She was a year and a half. Okay. Um, so actually, just before she turned one, we had a phone call to say, um, we there's a space in two weeks' time. And we're obviously we're like, yes, yes. Um, and then they said, Okay, we we need to confirm because I just need to check the surgeon, both surgeons' diary and check this and check that. And then a week later they said actually, yeah, we can't do it. And that was in April 2023. Um, yeah, so they call back and say they couldn't actually do it, so we were then waiting again, and then it had a call saying it was in October that she was going to have the surgery in October. Then one of the surgeons broke his leg, so we couldn't have it. That's unfortunate. Uh, and then and then luckily two weeks later they had another surgeon, um, and she was she was great, um, who can do the surgery in November. Uh so in the end, she had her surgery on the 7th of November. We were told to go to the hospital the day before um by 4 pm, so we're admitted at 4 pm the day before. Um she needed to fast from the night before. And and because I wasn't sure how when her surgery was going to be, um I wanted to keep I wanted to keep breastfeeding her until after her surgery at some point. But because I wasn't because I think it's it's it helps her to stay calm and for um for soothing. But since in in September time, I wasn't sure when her um surgery was going to be, and I've already gone back to work by a few months at that point, and I was pumping at work, so so um so I stopped breastfeeding her about two weeks before surgery. Um if only I kept going. But anyway, so we admitted the day before and she had to fast, and then just and then quite late at night, I think like 10-11 at night, they put a cannula in her hand for already prepping her for surgery and did some blood tests and stuff. The week before her surgery, I've taken her out of nursery because I didn't want her to catch any more bugs or anything like that, no more germs, and and that's because the week before that, she she did have a cold and she can't have a surgery if she has a cold or fever or anything. So the week before we took her out of nursery and spent a week and spent a week at home, then she went in to listen to her chest. She she did have a tiny, tiny bit of a cough, but it wasn't it wasn't bad. And they told me the plan, so this is in her right lung, her left lung works perfectly fine. So the plan was to collapse her right lung to remove that part of the lung. Now the surgery came and in the end they could not collapse her right lung because her left lung wasn't working perfectly because she had a bit of a cold. Yeah, so the night before they put the candle in her and then she slept there. Then the next morning, um, I think about half seven, the surgeons came and said good morning and told us the plan. Um, and then she went, we then walked her, walked with her to the theatre about 9, 9:30 for them to start the um operation. Yeah, so nine, about nine o'clock, half nine, she went, we walked her into theatre and I held her while they um put the drugs in to put her to sleep. And then she went to sleep, and then we were just in the hospital for most, well, for the rest of the day. Um I thought surgery will be four or five hours because that's what I read online. Um, surgery four or five hours. So we just left hospital, got some breakfast, came back to hospital thinking we're gonna get a call any moment now. Um and then by four pm, we still haven't heard anything. So I started looking for a nurse to find out what's happening. And the nurse um called the theatre and they said that they're still operating, but everything is going fine, don't worry. Um, so it's 4 p.m. and then 6 p.m. I asked again. And then I think it was then about just after I asked again, then a little later I my phone started ringing to tell me that she's out of theatre and she's in the recovery room, and we can go see her. So I went to see her and she was in the hospital baby cot. I can see she was just waking up, and immediately she tried to sit up. Um, but she was really groggy, and she you can tell that she was really sleepy, sleepy, and immediately she tried to sit up. So I went up to her and gave her a cuddle to t to try and get her to lie back down because at this point she had um candle in her hand, candler in her neck, she had another one in her neck, and two chest drains um from her right lung. Um, so she tried to sit up, so I quickly went up to her and they said I think the best thing to do is move her to an adult bed and for me to lie down with her. Yeah. And then we were then moved to the pediatric um intensive care unit, but in the high dependency unit section. And then we found out why surgery took um in the end, it was nine hours. Wow. Yeah. So what is on that? So basically, from so from the CT scan, they found that there is a like a vessel that's coming out of the left side of the heart that's connected to the mass. So as well as removing the lobe, they had to remove the vessel or somehow cut that part out. And because on the left side of the of the heart, it's quite difficult. The first and the surgery was all keyhole, so that took slightly longer. And the first few hours, they were they were still sort of looking around in the camera and deciding whether they're going to not do the surgery or do the surgery because her left lung wasn't fully perfect. Because she had a bit of a cold, her left lung wasn't working a hundred percent. So they made the decision not to collapse her right lung. They were looking around, deciding whether they're gonna go ahead. They knew that she's she's at that point, she was always sick, she was always she was always getting a cold. So they decided to go ahead. Yeah, so it only took nine hours. It was keyhole, so it was like minimal. She she got tiny little a few little scars in her.

SPEAKER_01 32:11

Okay, what about the recovery then? What's it like for such a young child?

SPEAKER_00 32:18

Well, I think the younger they have this, the better for any surgery, to be honest. Um obviously she didn't really know what was going on. She was lying in bed, she knows that she can't get up. Um, like once she has actually woken up, she I think her body felt very weak, so she couldn't um get up or move around. And she had the two chest tubes. The hospital was great, they did have um like a children's playroom, but she couldn't really go there yet, so we can bring her toys, and we brought some toys from home anyway. Then two days later, so I read that when they have the chest tubes in, it is the most uncomfortable, and that's when they still feel the pain. But once you can have them removed, they should get better like really quickly. And she was having an x-ray in the morning and an x-ray in the evening. Uh, her x-ray shows that her right slung has collapsed. Um, so then they had to replace one of the tubes because they're like something is leaking, and they didn't have whatever tube that it was that they needed, so they needed it from another hospital to get it from another hospital. And as soon as they replaced that tube, her lung um expanded again.

SPEAKER_02 33:37

Okay.

SPEAKER_00 33:38

Um, and then this basically said after another x-ray, if her lung stays like this, then we can remove one and the day later remove the last one. Um, so luckily everything worked well, and they were able to remove one tube and the day later remove the final tube. We were discharged five days after surgery, and on the fifth day, they then removed like the candle in her hand and the candle in her neck. Um we went home quite late.

SPEAKER_01 34:05

The whole time.

SPEAKER_00 34:06

The whole time, yes. So um to be honest, she didn't even notice them by that point. Like when she still had the thing in her neck, it was the whole like everything was just dangling from her neck, and she was walking up and down the corridor, going into the playroom to find um the their play Hoover and walking around the corridor. So, yeah, so the first couple of days she knows that she was she was like really struggling to to sit up and she kind she kind of know she knows it, and I think it was the second or third day then she started wanting to stand up in her bed, and um and then in so they used to bring the whole x-ray thing to her, and then I think on the third day when she was trying to stand up, we thought we'll go to the x-ray instead of them bringing it. So we walked with her to the x-ray bit, but you can see she was very, very wobbly um at that point. Um, yeah, and then by fourth and the fifth day, especially on her final day, she was shaking the bed. You can see that she we were all ready to go home. Um then once we were home, she needed antibiotics, and we kept her home for another week just to try and keep her sort of like germs free for another week before she went back to nursery.

SPEAKER_01 35:32

What what what does that mean to um keep her germs free at home? So that means that's a good thing. I mean we have loads of germs at home. Well no Usually we do, but on this week.

SPEAKER_00 35:42

We had not germs free, but um just to uh keep her at home away from just in case we there's like sick children or so she doesn't pick up any cold. We didn't have any visitors, we don't have family near us anyway. So but we did have visitors actually. We had some friends come over with uh card and balloons and stuff for her. Yeah.

SPEAKER_01 36:03

That's kind. Right, so what happens after the surgery? Does at what point does she need to go back for them to check that everything is fine?

SPEAKER_00 36:14

Um so five months after surgery, we went back and met the surgeon. Uh and they basically said everything went really well. D the day the day after her surgery, the surgeon actually came as well to speak to us and told us what happened. And then she actually came every day until we were discharged, I think. Yeah, so then five months later we went back, met the surgeon. It was just a quick checkup and basically explained that in the future we would be followed up the by the uh respiratory consultant. Uh, and then another five months later we went back and met the respiratory consultant who listened to her um breathing, her chest and stuff like this. But at this point, she has been really, really ill twice, once in the summer and once in October. And our meeting was him was in November. Um so she was then prescribed with an inhaler that she has to use twice a day until whenever they tell us that we can stop.

SPEAKER_01 37:15

How long do you know how long she will have to have those follow-up checkups?

SPEAKER_00 37:20

Probably until she's an adult. Okay.

SPEAKER_01 37:23

Um, uh maybe full growth of her.

SPEAKER_00 37:28

Um yeah, I mean, whenever she's been ill now and we've taken her to the GP and they listen to her chest, they they've said that they can't tell that she had surgery because her chest is fully expanded. Um, but they also check um her spine and it's not just listening to her lungs, they check her her growth. Um yeah.

SPEAKER_01 37:51

Okay. Right, so until end of until I guess so, yeah. Probably.

SPEAKER_00 37:57

Yeah.

SPEAKER_01 37:58

Okay.

SPEAKER_00 38:00

What's life like for her now? Um, you know what, you wouldn't be able to tell that there's anything wrong. I don't think she remembers surgery sh or or anything. Um she was terrified of going to the doctors and hospital for a while because um I mentioned that she was sick twice um really badly, and we had to take her to AE. The first time we took her to AE without thinking that she needed to be admitted, and she was admitted for a few nights. Then a second time I took her to the GP hoping for some antibiotics because um her cough and her breathing was so bad, and I thought just some antibiotics. Then the GP called us an ambulance and took us to the hospital. So ever since then, she really doesn't like anything to do with the doctors. But when I was pregnant with my second the second baby, um every time I went to the hospital for a checkup, I would tell her I need to go to the hospital for the doctors to look after me. And I think she's now much better. Um, because she had her preschool jabs a few um a few months ago, and she was really looking forward to going to get her injection.

SPEAKER_01 39:06

Okay said no one ever.

SPEAKER_00 39:09

Yeah, she was really excited for that. Yeah, she does, you know, the normal toddler sports stuff and she runs around like a normal, normal kid.

SPEAKER_01 39:19

So at the very beginning of the conversation, you said that uh one of the reasons why you wanted to share your story was to raise awareness. What could we be aware of? Is there is there anything that maybe um you would have done differently? Anything that could have prevented that situation? I don't think so, but um potentially what did you have in mind?

SPEAKER_00 39:42

I think about that a lot, whether there was anything that could have prevented this or anything I could have eaten or taken or not do, there isn't anything. Her defect affects approximately one in 20,000 people, but recent research suggests that it could be one in five thousand, it's just not detect it. We just didn't have the technology before, or certain places don't have the technology to detect to detect um like to have this sort of quality images in an ultrasound or the understanding of it. Um so it could be more common than one in 20,000. So what was the question?

SPEAKER_01 40:30

Um about raising awareness, um what what did you have in mind? What would you like future parents or current parents to know about the lung defect situation that affected your daughter?

SPEAKER_00 40:44

I think one of the things that is quite difficult um is at the beginning is to talk about it because you feel like you've done something wrong. You feel like did I was I standing I don't I don't smoke, but was I around people who smoked? Was I doing something wrong? But this sort of thing is so random that you can't you can't prevent. So, and also because of this, you kind of feel quite lonely as well. Um like when we got to our 20 weeks scan with the NHS at the hospital, we were just so concerned that we only care that the baby's healthy and the baby will live, not um the sex with the baby. So we didn't find out the sex of the baby. So yeah, I guess it's just to talk about it really and ask questions, ask the doctors and the surgeons when you get a chance to meet them. I think the heart, the heart of it is being strong for her. Because when before she went in for her surgery, you can't tell that there was anything wrong with her. So I felt like I handed over a really healthy child, and then she came out pale with breathing tubes, with tubes coming out of her body. And that's and that was really difficult because when she went in, she was smiling, she was really happy, she had no idea what was going on. And then next minute the next time we saw her at the end of that day, she had, you know, she just didn't look well. Um so yeah, find people to talk about it.

SPEAKER_01 42:27

Is this a hereditary um? It is not. It's not no. So she would not be passing it down to potential children. And it was also not a concern that you would be having more children with the same condition? Yes, correct. Okay, okay. Um And when we're talking about other children, we're talking about the little man that may be hearing in the background. He is very vocal about his sister's condition. He wants to make sure that we talk about it.

SPEAKER_00 42:59

He wants to make sure that he's heard as well.

SPEAKER_01 43:01

Yes, as well.

SPEAKER_00 43:02

Um Yeah, so so we did have an option for not having the surgery, but there's um risk that this mass can turn um cancerous in the future. Um we decide it. While she's young, before she knows really what's happening, to have it removed. Yeah, so they remove the whole lobe on in the right slung because they basically said there was very little healthy tissues left for them to try and save, and it was just e it it just makes more sense and easier for a keyhole to remove the whole thing and then try to pick the mass out. Yeah. I think if you find yourself in a similar situation, um seek out people who are in a similar situation and have conversation with them um and read the different stories because there's so many different cases around the world, and majority of them are successful than people have had surgeries. Um So seek them out on Facebook, Instagram, and if you want to have a chat with them and also speak to the surgeons and ask them questions. Yeah, that's it.

SPEAKER_01 44:13

Do you have any um Facebook groups, um Instagram accounts that you would recommend?

SPEAKER_00 44:19

There I actually found two Facebook groups. One of them is quite active with loads of thousands and thousands of members around the world, and then there's a smaller group. Um, so I've joined both. Um, but yeah, I think it's just called C P I think it's called Parents of CPAM. Yep, Parents of CPAM.

SPEAKER_01 44:38

Cool. If you can share the links with me, I will put them in the show notes um for anyone to access um later on. I'm sure surely that could help a parent of you out there. Sure, no problems. Anything on Instagram or another platform that you would recommend?

SPEAKER_00 44:55

I thought I saw something on Instagram, but I can't remember now. Definitely on Facebook. Um and the Peanuts app. I have seen a couple of people asking on the Peanuts app before, but again, they then refer them back to the uh Facebook group.

SPEAKER_01 45:09

The Peanuts app as in the app to introduce parent new mums to other new mums? Yep. Oh, okay. I didn't realise they had that function. So so so how does that work?

SPEAKER_00 45:20

So there's there's different groups on um the Peanuts app, and you can search keywords, I think. Um and I remember there were just I think it's just a group in England, and people were posting, or I saw a couple of posts, people asking um whether their children have this condition with a lung and um if they could just either connect or any advice and what hospital to go to. And the Facebook, the Facebook page, um, the admin had created a spreadsheet with lists of different hospitals around the world and the surgeons related to that hospital who operate who uh does this sort of operations.

SPEAKER_01 46:03

That's an amazing resource. Thanks for that. I didn't realize that Peanuts did that. I I've I've never used Peanuts myself. So sorry, that was Facebook. Oh, sorry, Facebook. Facebook. Well, I have used Facebook in my lifetime. Um but no, that that's amazing. Um thanks so much for that. And yeah, if you can share the the link, I'll just add that into the show notes.

SPEAKER_00 46:23

We'll do, thank you.

SPEAKER_01 46:24

Brilliant.

SPEAKER_00 46:25

I don't have anything else to share, but do you have any questions?

SPEAKER_01 46:28

I think I'm good. In that case, I mean thank you so much for sharing your story. I can't say how much I appreciate the fact that you trusted me to share your story and to push it out there for other parents, uh, either with a similar situation or a different situation. But there are very many parents with little ones that um unfortunately have to start their lives with surgery, with going to the hospital, with you know, all these different things and who don't just have the worries about, oh my baby's not sleeping at night, or my baby's not um, you know, they don't like carrots or they they they didn't eat their greens or, you know, those things. Probably regardless of what your situation is, when you have a situation that is not standard, not normal situation, it can very quickly feel very isolating and lonely. So thank you so much for sharing your story, and I hope that can go and support um those in similar places.

SPEAKER_00 47:24

Thank you. Thanks for um listening to me and having me.

SPEAKER_01 47:27

Thanks so much, and thanks um to Little Man as well. Yes, um we will remember him from his first uh interview. This is his second. A little bit older, but uh still just as chatty. Thank you so much, Little Man. We'll be back. Speak to you next. Thank you. Bye bye. Anita, thank you. Thank you for coming back to this space and trusting us with the rest of your story. You didn't have to, and the fact that you did with such openness and such grace means more than I can put into words. Thank you for talking about pregnancy loss, for saying out loud what so many carry in silence. That takes real courage, and I know it will have landed with more people than you'll ever know. And thank you for taking us through those first 18 months of the appointments, the worry, the hospital stays, the surgery, the love that runs underneath all of it, watching you reflect on that time, I was reminded just how much strength parents find when they have no choice but but to find it. If you listen to this episode and saw your own story in it, whether you've experienced pregnancy loss, or you've spent some time on a hospital ward with your baby, or you're in the middle of it right now, I want you to know that this village sees you. You're not doing this alone. And if this episode moved you, please share it. Because there is a parent out there who needs to hear this today. Anita, your daughter is so lucky to have you. As always, thank you for listening and for being part of this village. And I'll see you in the next episode. Raising with the village will now be released every other Thursday, giving me the space to keep bringing you thoughtful and honest conversations. You can find all past episodes on Spotify, Apple Podcasts, Amazon Music, YouTube, or wherever you usually listen. And you can follow the show there, add some new episodes, then straight into your feed. If you'd like to get in touch, share feedback, or suggest a story, you can find me on Instagram at Raising with the Village. I always love hearing from you. And if this podcast has resonated with you, one of the best ways to support it is by subscribing, rating, leaving a review, or sharing an episode with someone who might need it. It truly makes a difference and helps these stories reach the people who need them most. Thank you for being part of the village, and I'll see you next time. Bye bye!