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Losing a baby at 20-24 weeks of pregnancy

Deciding whether to have a post mortem

When a baby dies, there are several options available to try to understand the cause. Most mothers we spoke to had investigations of their placenta and blood tests to try and understand more about the reason for their loss. When a baby has died, either before or after birth, parents may be offered a post-mortem, for which the parents have to give signed consent. Deciding whether or not to have a post-mortem was a very individual decision for parents.

Why parents decided to have a post-mortem

Some parents chose to have a post-mortem to try to find the reason for their baby’s death, which could help them to understand their loss and plan another pregnancy.
 

Vikki Z had an overwhelming desire to have another baby and wanted to know what plans needed to be put in place.

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Age at interview: 38
Sex: Female
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And obviously Christmas is a happy time of year, isn't it. And everyone was busy, and getting excited, and all the rest of it. And I was doing all the things that I should be doing, but didn't feel like doing any of them. And, and I just felt terribly, terribly sad. And just - yeah, just missing - I just felt a total - a total emptiness. And it was - I wanted her. I wanted her. But I knew I couldn't have her. So immediately, as soon as she was born, the desire to have another baby was just overwhelming. It was just - It was the only thing that I could - that, that I could think about. I was obsessed with having another baby. It was just like I needed to be pregnant again. 

And that's why I sort of - almost on a mission. Right I need to know, I need to know what was wrong, so I can put that right, so that we can have another baby. So that you know, we just - it was just - yeah. I just needed to know. And I'm a very practical person, and I need a plan of action all the time. So that was my plan of action. And so that's what - that's what we did, really. 
 

Sarah decided to have a post-mortem to help with planning a future pregnancy so they wouldn’t have to experience losing a baby again.

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Age at interview: 34
Sex: Female
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We agreed, we decided we wanted to have a partial post-mortem.

Right.

Because - Originally we thought oh, no - look, there's no - we're not going to do any post-mortem, what's the point? There's no - What's the point to it? But someone actually said to us, "Well, if you think about having another one, you'll want to know it's something that's not going to happen again. Otherwise that will then play on your mind the whole time." And although we hadn't decided for sure whether we would try again afterwards or not, we thought it would be better to know, in case we did.

So we decided on a partial post-mortem. Which is something that once again the hospital talked to us about all the different options that were available to us. And so we needed all the bloods to make sure that it was, you know - they just wanted it, to test all my blood work as well. 

And then the last thing we had to do was get the post-mortem results. 

That was done by my consultant at [town]. So then. Yeah, so we met the consultant at [town]. And she went through all the findings with us. And frustratingly, it was - it was technically inconclusive.

Right.

And they said - We were warned that that could be the case, it could just be there was no particular reason. But they did note that he'd had an unusually long umbilical cord. And that where they know that the placenta wasn't functioning - well, not - they said the blood flow wasn't getting through fantastically well. 

So the consensus was that there had been an issue with the fact that his umbilical cord was so long, that maybe there had been a knot, or - although there was no physical knots at the time, that there may have been like it could have been tied round, or it - you know - that it had been somehow like, you know, that the blood flow wasn't getting through because of - just due to the length of it. And apparently the pathologist had never seen one that long on a baby that early. So, so yeah, they said it would be unusually long at a full term birth, let alone at that stage, so. That was the, that was the conclusion. And that it would - the chances of it ever happening again, were we to go on and have another baby, were very, very slim.

And how did you start thinking about having another baby?

So we - we talked about it. Because my husband was really unsure. Because we hadn't actually planned to have a third baby. So that was, that was the big thing. Obviously we've got two older children. We hadn't planned to have, have our son in the first place. But we then got used to this idea we were having another baby. You know, got - My son was very excited about being a big brother. My daughter was very excited about having a baby in the house. And I'd got used to it. And this idea, and this - you know - We knew we had all this baby stuff we'd collected up. Although it was stored away now. And, and eventually we did decide. And I say eventually, it was - you know - In terms of actual time, it wasn't very long. But obviously when you're going through this grief period, it does feel like ages.

I decided, you know - Or we decided. I said to my husband, like "I do want to have another baby, if we - if you're okay with that." And he said that yeah, he - because he'd got used to the idea as well. And so we decided we would try again. So when we - We spoke to our consultant. Because we wanted to make sure - we decided that we basically - we would wait until we got the post-mortem results. 

Because if it had turned out it was something to do with my anaemia, or my thyroid, or anything like that, then we wouldn't want to risk it again. Because there was no way we were ever going to go through - we didn't want to do that again. So it would very much depend on the outcome of the, of the post-mortem results. And so when we found out it was something that was very unlikely to ever happen again, you know - she said the odds were completely in our favour, and that we would - she would fully expect us to go on and be able to have another healthy baby. So we were told to give a, to give it three cycles, at least. To make sure I had three full cycles. Because I was a bit hit and miss, as you can be after you have a baby. And that's something as well, that I don't think people really think about too much, is actually you have just had a baby. And you do have to have that recovery period.
 

Sarah really appreciated how the midwives at her local hospital would ring her and keep her up to date every time her baby was moved.

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Age at interview: 34
Sex: Female
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And then, then the bereavement midwife, she did come round. And she talked about funeral options. Because we were given, we were given the chance to have a funeral as well. So the [town] hospital organised it all with one of the local - I think it's [funeral director], or someone nearby, who do their ones. And we had a free funeral, a free cremation. They paid, they just organised it all. There's - We talked to the - Well we had to wait for the post-mortem to be done. And we knew - And like every time anything happened, they did phone us and let us know. Like they - Because I was always worried like where he was. And I knew he had to go to [2nd town], for the post-mortem. And so they - she said "Just to let you know he's gone to, he's at [2nd town] now. And I will let you know when he's come back now." 

And so then I was always told where he was. So it wasn't just a case of - he wasn't just a body being moved round, he was still very much treated like my baby. And then once the post-mortem had been completed, we were told that we could make it - given that options for dates, for the cremation. Because they do - at [town] crematorium, every - I think it's the first Wednesday of every month, they have three slots in the morning for stillborn babies. 

So, we chose one - actually, the only one that we could do, without having to then wait for a whole other month, because of my husband's birthday. But they said, "Well we can try and do - we'll see if we can get one - you know, we'll do the next month." But we thought well no, it's just - it's just making things longer and longer and longer. And as I said, we thought it was just good to get - hit these milestones. We felt like there was a certain amount of hurdles that we had to go through, in order to then start like healing afterwards. 

And this was the next hurdle. This was the next hurdle. And we didn't want to put it off for another four weeks. And we knew the kids needed it. We knew they needed to deal with it. And so my husband said, "I don't care, it's not like I'm going to be celebrating anyway." So it's, so we did. We had the funeral on, at the crematorium.
Some parents were worried about the possibility of a genetic condition. The appearance of Kerry’s baby suggested there may be a genetic cause which a post-mortem could reveal. Some parents said they wanted an investigation so that more could be done in future to help babies with similar problems.
 

Alison’s baby had a rare kidney condition and decided to have a post-mortem to help with research.

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Age at interview: 30
Sex: Female
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And we'd, we'd given permission for I think - I can't remember at what point we talked about this. It was - some point in the process we talked about autopsy. 

Because we kind of wanted to - We wanted to know what had happened, and if there was anything that could be done to help other - Because the, the chances for research on this are so rare. So we allowed them to do a full autopsy, to see what the, the cause was. It was as they had diagnosed on the ultrasound. He, he was - he didn't have any kidneys at all. And so the - And we got the results of that quite, quite a while later. I think that took - that took a little while. 
 

Liz opted for a post-mortem to help check whether anything went wrong that she was unaware of at the time.

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Age at interview: 40
Sex: Female
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So that post-mortem was organised by [Town B] hospital?

By the hospital, it was.

Okay.

I was asked if I wanted one.

And I very much did. And again, this comes back to sort of understanding what they're asking, I think. 

Because I know other women have felt that they've either not been asked, or they haven't understood and so on, but I - I know the different sort of types of post-mortem and tests and so on that you do, and I said I want - you know - if I'm entitled, please can I have - I'd love to know, I just want to know anything that has gone wrong, please find out for me. And so yes, they did the full, full works. So I've got the full post-mortem report of them. 

Okay.

And that for me was invaluable. Almost for me to know that there was - Not that the hospital were hiding something, but that there was something that hadn't been missed. You know, that there wasn't something on there glaring, that somebody had forgotten to tell me about. I was able to read those post-mortem reports and go actually - chromosomally they were fine, weight, size, everything else, bloods, it was all fine. And you know, there was nothing on there that I could say, "Well they didn't, they forgot to tell me that bit." So I was able to then go into subsequent pregnancies or fertility treatment knowing that actually it was unlucky rather than a pregnancy issue.
Why parents decided not to have a post-mortem

Some parents chose not to have a post-mortem. In some cases it was because there was no problem with the appearance of their baby’s body and the cause of the death was thought to be associated with the mother’s health rather than the baby. 

Kelly and Kamie had more than one loss. The post-mortems with their first baby had been inconclusive, and so they both chose not to have a post-mortem on their second child as they didn’t feel it would help. Michelle and Ian decided that their family was complete and so didn’t seek additional information about why their baby had died. Some parents did not want their baby’s body to be “tampered with”. Several mothers who chose not to have a post-mortem did agree to their blood and placenta being tested to try and establish the cause of death. This could help understand whether there was a problem with the mother’s health that could have explained what happened.
 

Kamie had a post-mortem for her daughter Hope but as this was inconclusive she decided not to have one for Lottie.

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But I just wanted to find out why. But even when we went to see [doctor] to find out why - Because we didn't do the post-mortem with Lottie, because I knew basically there would be nothing wrong. Because it was exactly the same as last time. And I thought I'm not cutting her all up, just for the sake of - there's nothing wrong with her. Whereas with Hope I donated you know, bits of slides and things, thinking there was something wrong. But I couldn't do it this time. But they - they took the placenta and everything. And everything come back fine. I had no strep B, I had nothing this time. But it just felt like you was just hitting a brick wall all the time, and - when you was asking like why, and you just get no answers. 
 

Lindsay explained how she didn’t want a post-mortem because she didn’t want her baby’s body tampered with.

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Age at interview: 35
Sex: Female
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And can you remember why you didn't have a post-mortem on him, but you did on the placenta and the cord?

Yeah. Because I didn't want him tampered with, really.

I felt like he'd been through enough. He'd already given up his life, to save me. And the thought of someone cutting him up, for what, really? You know, I think maybe my decision would have been different if he'd had some kind of chromosomal or genetic issues. But everything was saying that he was healthy, and the problem was with me, so. And I was really glad with that decision. Because when they did come back, there was no sign of infection in the umbilical cord at all, so it hadn't even passed to him. So he was just a healthy twenty week one gestation baby. So I'm really glad that we didn't do that. Yeah. 
Making the decision about a post-mortem

Making the decision to have a post-mortem or not often came at a really difficult time for parents, either during labour or straight after birth. Helen Z and her husband initially decided they weren’t going to have a post-mortem as they didn’t want to put their baby through the procedure. But over the next week they changed their mind because they felt they didn’t want to put another baby at risk in a future pregnancy if there was something wrong.
 

Lindsay explained how difficult it was to manage her grief when she went home while trying to behave normally for her son.

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Age at interview: 35
Sex: Female
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And that was so weird. It's so weird walking out of hospital with just my Sands memory box, and my Aching Arms bear. Leaving Henry in the chapel of rest there. That was awful. And just, yeah. Leaving, walking alongside the people that have got their babies in their car seats, you know. And it just felt so wrong. It was so - it was just so wrong. The whole thing, you know. And just leaving, empty. Like literally, physically and emotionally empty. And we came home, and it was nice to be home in some respects, to have my own bed and stuff. But I literally had about five seconds of being home, and being like oh my goodness, we've got a half made-up nursery upstairs, what am I going to do with that? Letting it sink in, before [my son] came back and I was back into normal mum mode. 

And I think whilst [my son] has been a fantastic distraction, it has meant that even now, I wouldn't say that I have had an opportunity to really process what's happened. And some of that is my own mental protection, I think. But, yeah. It's very difficult to grieve when you have to appear normal to your child. 
 

Helen Z described how planning another pregnancy made her change her mind about whether to have a post-mortem.

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Age at interview: 37
Sex: Female
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But I think about a week later, when we were thinking - Because we didn't know whether to have a post-mortem. 

And we were very much - we weren't going to have a post-mortem, he'd been through enough. He was very small, and we didn't want to put him through it. And then I think over the week when we were thinking of if we ever did have another baby, we couldn't put another baby through it if there was something wrong. And that he'd want to help if he could. So then we decided that we would have a post-mortem. So we had to go back and see the bereavement midwife. And it was at that point that we said could we have his hat. So she went and got his hat. And it was quite hard knowing that she just nipped out of the room for two minutes and got his hat, and he was right there.

But I knew that I couldn't go and see him. I couldn't have done it to myself again. So I decided - I just - We didn't go and see him again. But she gave us his hat. And then we had a post-mortem. And everything came back normal, there was nothing wrong, that they could see nothing wrong. 
Getting the results of investigations

Parents had to wait up to 4 months to receive the results of a post-mortem. Most received a paper copy in the post before meeting with a consultant to discuss the results. Some parents found the medical language of the written report very difficult to understand. They generally found the appointment with the consultant helpful and were reassured if they were thinking about getting pregnant again. Lindsay’s consultant said they could have “all the time in the world” to discuss the results. Lisa and Matt also felt they were given plenty of time for questions. But a few parents did not have such a good experience. Vikki found her discussion with the consultant “rushed” and Joelle felt her consultation was impersonal, talking about her uterus and not her as an individual.
 

Camille’s consultant wanted to give her the results of the post-mortem in person because the report is written in very technical language.

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Age at interview: 26
Sex: Female
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And how did you get the results of the post-mortem? Did they send those to you? Or did they -

No. They were - They did tell us that that would - that we would get an appointment to see the consultant with all the results, within six weeks.

I chased this up - I can't remember when. Because I knew that the results had come back. I can't remember how. I'd found out somehow that they got the results back, and that they were sat on a desk. And at that point, I just needed answers so badly, that I phoned the secretary and I said, "Can you please send them to me?" Because I don't know if they'd given me an appointment - I don't think they even had given me an appointment - or if they had, it was weeks away. And I thought, "I can't wait that long, can you just send me the results, please?" And she said, "Okay." And then later on that day I got a call from my consultant saying, "I really, really don't want you to read these results on your own. Because even with medical background, there's a very, very good chance either you're not going to understand them, or you're going to misinterpret them." And he didn't want me to do that. And obviously it's very hard to read as well, because it's very medical. So, you're reading something about your baby, such as if you're reading the form of a piece of meat, and it's just details of different - you know - they don't even say baby on there, it's 'foetus of that gestation'. And things like that. Which is not the easiest thing for a parent to read. So I do understand their point. But thanks to me saying that, they actually gave me an appointment a lot sooner, as well, to see him. 
 

Alison found it helpful having a written copy of the report to remind her of things that she was told when she was in hospital.

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Age at interview: 30
Sex: Female
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So, when you went back to the hospital after Axel's birth, how long did you have to wait for the post-mortem? 

It was a couple of months. Six weeks, eight weeks? I can't - I remember it being quite a long time that, I think I was back at work. And we went back in and talked it - and the consultant went through everything with us, and that we were sent out a hardcopy with all of the details on it. Because we'd. So that - I think because like when actually you're in the hospital you're kind of - you're not necessarily processing everything. So to have the hardcopy at home kind of was, actually you can look at it and see all of the details, and have all of those still available. What we didn't have was, was all of my pregnancy notes. Because they get - they got - they get taken away. They got taken away with [my daughter], as well. So, all of the letters about how she'd progressed. Which actually I'd quite like to have, for future pregnancies as well. Because you could kind of have a look, and reassure yourself that this is what was happening at that point, and things. So, yeah. So it was a couple of months. 

And was the report that was sent to you - Is that accessible? Is it easy to read, or?

Yeah. Yeah, it was fine. I think it - I mean, obviously I don't have any medical background. I think it was - I remember it being laid out, different areas of the body. And then describing. I think some of the language was a little bit - but you could, - because the doctor had talked us through it, and explained. It was written in medical language, not in necessarily that easy to understand. But it was - I think we found it okay, we understood what it was saying. Yeah. So it was, yeah. 
For some parents, the post-mortem offered answers which helped with planning future pregnancies. Several mothers had problems with their cervix or blood clotting identified. Alison received confirmation that her baby had no kidneys and so would not have survived after birth.
 

Investigations helped Kelly understand the reasons why she had gone into labour early and plan for another pregnancy.

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Age at interview: 39
Sex: Female
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But yeah, I had a follow-up appointment, must have been about six weeks after I'd lost Grace. 

And I went up to the hospital, and she said, "Did you know you had a blood clotting disorder?" And I said, "No. I didn't." And she goes, "Yeah, you've got a blood clotting disorder, which we can treat in like future pregnancies if you did decide you wish to try again." And I said, "That's the first time I've even known about that." Because I had had tests done previously, and that had never been identified. I don't know whether they ever tested my blood or not. So she said "You've got something called Factor V Leiden." 

Okay, yeah.

And she said, "What would have been happening is tiny blood clots would have been forming on the inside of the umbilical cord. Which would have prevented like the - all the nutrients and the oxygen getting to the baby properly."

Oh, wow. So they found a kind of - a cause.

Yeah, they found a cause out. 
In some cases parents found it helpful to have confirmation there was nothing else wrong with the baby or to have a cause of death ruled out. Other parents found inconclusive results frustrating, with lots of probable causes such as infection but nothing definite. This was particularly difficult for some mothers who felt guilty that their body let their baby down. Joelle emphasised how important it was to believe other people when they said it wasn’t your fault no matter how hard that was.
 

Vikki Z was reassured and frustrated by the inconclusive results of the post-mortem.

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Age at interview: 38
Sex: Female
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So can you take me through the meeting with the consultant about the post-mortem?

Yeah.

What did you learn from that?

So it wasn't actually very conclusive whatsoever. It was all 'maybe', and other things. So, what we did find out was that she was a girl, and she died some time in the week before she was delivered. Which made me feel less crazy, because she was quite small. She was only the size of sort of a seventeen week old baby. And what they said is that they - that she had obviously just been growing slowly. Because I was thinking 'well, if she's that size, why have I been feeling movement?' You know? And that was making me feel quite crazy. So, that reassured me, and made me feel a lot better. I don't know why, why it should, but it did. And they said that there were lots of clots in the placenta. Which had - which was - Everything was 'probably', it wasn't actually certain. So there were no genetic - there was no genetic problem, there was nothing obvious, she was a perfectly healthy baby girl, other than these clots in the placenta. Which they think may have caused her to grow slowly, and that actually - that that probably was the reason why she eventually died. Which made me so cross. Because they wouldn't say definitely. 
 

Carly had mixed feelings about the post-mortem results.

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Age at interview: 30
Sex: Female
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But in February 2016, when I was about nine weeks pregnant with [my daughter], we did get the autopsy results back. It took about four months altogether.

And her umbilical cord was a lot longer than average. And it had tangled up. And that's why she had died. And so we knew it wasn't genetic, or - you know. It was, it was a horrible accident really, but no one could have prevented it. I didn't do anything wrong. The doctors didn't do anything wrong. It was just the cord tangled up. So I felt really mixed about the autopsy. 

Because I felt well on the one side at least I knew, so I could get rid of the guilt - you know, that I didn't do anything. Because I'd sort of convinced myself I'd done something, or I'd slept on my tummy, or you know - I'd killed her. And then on the other side, it made me so sad, because she was perfectly healthy. And if it hadn't been for that umbilical cord, she would have been fine. 

You know, I think it almost would have been easier to hear, like she would have been - you know - had no quality of life, you know? But to hear that your perfectly healthy baby died for no reason, it's hard to swallow.
 

Courtney found it hard not to blame herself when she found out there was a problem with her cervix.

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Age at interview: 30
Sex: Female
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Even when our son was born, he was - he was born breathing. You know, because there was nothing wrong with him. And that makes it hard, because you know, if there was something wrong with him, I'd be like - it was better for him, I could understand it. But it's really hard for me to not blame myself, because obviously it's my condition that has caused it. But. And it's just frustrating that - to think that when you think it's your fault, and it's your condition that's caused it, and that you're trying to get help for that, and no one is giving you any help - that's really tough, as well. Because you literally feel like, like 'what can - what can you do?' You feel lost. And amongst all your grieving, it's really - it's been really tough. Really, really tough.
Further investigations and treatment

Several parents we talked to had experienced the loss of a baby in pregnancy several times. Some were offered help through special recurrent loss clinics while others struggled to obtain further investigations to explain their loss. Emily and Mike were frustrated when Emily was told she wasn’t eligible to attend a recurrent miscarriage clinic and appreciated the help of a midwife to access the service.
 

Vikki Z was offered a plan for her next pregnancy after attending the recurrent miscarriage clinic.

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Age at interview: 38
Sex: Female
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We were - Oh, we were able to - So we were able to see the recurrent - went to the recurrent miscarriage clinic.

That's what they sent us to, because I'd had previous miscarriages, and this one was a late miscarriage. They said, "Yeah, you know, you can go there, if you do want another baby." So we went there at the same time as getting the post-mortem report. And what they actually were suggesting is that - and they'd done all blood tests and everything. They were saying that she was perfectly healthy, and that she was fine. And what they would suggest for my next pregnancy is to - that there were no reason why I shouldn't get pregnant again, and what they were suggesting was that I should take aspirin, and that I should have - maybe think about the blood thinning injections. And, but they didn't say for certain, that. And they said that I would get regular scans. And you know, that everything should be fine. But I was annoyed, because in my head - I was really cross - if I'd have taken aspirin, I'd have taken blood-thinning injections, would this have happened? Because they're saying that, you know, this baby's perfectly healthy, there's no - nothing wrong with her whatsoever, other than this placenta has got clots in, and wasn't working properly.

So, yeah. But at least that meant that there was no reason why we couldn't have another baby, I suppose. So - so yeah, we did start, start trying as soon as possible, really.
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