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Episode 89 - With Saffire Eden · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshprung's Podcast, a space where
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Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
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Speaker 1: live with it, care for someone who has it, or
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Speaker 1: just want to understand more, this podcast is for you.
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Speaker 1: Each episode, we will explore real stories and honest conversations
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Speaker 1: about a condition that often goes unheard. Thank you for
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Speaker 1: tuning in. Hello, and welcome to episode eighty nine of
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Speaker 1: Tom's Hirshprung's Podcast. I am joined this evening by Sire Sapphire.
0:55
Speaker 1: Welcome to the podcast. Hi, thank you, thank you so
0:59
Speaker 1: much for coming on.
1:01
Speaker 2: Now.
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Speaker 1: We have a couple of interesting topics that we're going
1:05
Speaker 1: to talk about. Obviously, we're going to talk about your
1:07
Speaker 1: daughter's story with Hirshbrungs, and we're going to talk about
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Speaker 1: a few other topics as well that we haven't covered
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Speaker 1: so much on other episodes. But I think are going
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Speaker 1: to be incredibly vital. I think a lot of people
1:23
Speaker 1: are really going to want to stick around and listen
1:26
Speaker 1: to the topics that we have to discuss. So I
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Speaker 1: guess kind of start from the beginning, if that's if
1:36
Speaker 1: that's all right with you, are.
1:40
Speaker 2: I guess the beginning is in my pregnancy. That was
1:44
Speaker 2: just before my hush fruns daughter's pregnancy. That's when I
1:47
Speaker 2: first heard the word hirshbruns. I have two children that
1:51
Speaker 2: didn't have any intestinal issues, no problems. They came home
1:56
Speaker 2: from the hospital immediately. And in the end of my
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Speaker 2: segment second pregnancy, my obituarian ordered a genetic screening test
2:05
Speaker 2: because I started showing problems with my syrid and he
2:07
Speaker 2: wanted to know why, and it came up with multiple
2:11
Speaker 2: ender kid neoplasia type two A, so I, yes, I
2:15
Speaker 2: have a problem with my thyroid, and it came up
2:19
Speaker 2: with an association for her SPRINGDS. I googled it. It said, oh,
2:23
Speaker 2: you would have known if you had her springs as
2:26
Speaker 2: a baby, so you know, ignore that. I said, okay,
2:29
Speaker 2: you know. I had my second daughter a week later.
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Speaker 2: She had no problems, so that I really quickly got
2:37
Speaker 2: pregnant with my hirs springs baby. She was born eleven
2:40
Speaker 2: months after that pregnancy, and a nurse had come in
2:46
Speaker 2: towards the night of the first night in the hospital
2:48
Speaker 2: and she asked me if I had changed a diaper,
2:52
Speaker 2: and I said yes, And as she was walking out,
2:55
Speaker 2: I said, oh, did you change a dirty diaper? Because
2:58
Speaker 2: I realized I hadn't changed poopy diaper yet. And I
3:01
Speaker 2: don't know why neither of us felt we could just
3:04
Speaker 2: say the word poop, did the baby poop? But neither
3:07
Speaker 2: of us did so. When I asked her she changed
3:09
Speaker 2: a dirty diaper, she also said yes, but she meant
3:13
Speaker 2: she had changed a pee diaper as well. And so
3:15
Speaker 2: now into the next day, we're almost at a twenty
3:18
Speaker 2: four hour mark. Now the baby still has not poop.
3:23
Speaker 2: They start her with suppositories and enemas, and they're telling
3:29
Speaker 2: me that she's making progress pooping. But I had some
3:34
Speaker 2: pretty severe mental health issues at that period of time,
3:38
Speaker 2: and I remember kind of hollering the first day in
3:41
Speaker 2: the hospital that I wanted to go home and crying.
3:44
Speaker 2: I've been in the hospital many times before, I've had
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Speaker 2: several surgeries, but I must have been really having some
3:51
Speaker 2: mental health problems with my postpartum. This time. I felt
3:55
Speaker 2: like I was trapped at the hospital. I felt like
3:57
Speaker 2: I wanted to go home, and they told me that
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Speaker 2: I could go without my baby, and with them telling
4:02
Speaker 2: me that she was making progress pooping, she'd go home
4:05
Speaker 2: in one or two days, I just went home. What
4:09
Speaker 2: are you doing? What are you doing to see me? No,
4:13
Speaker 2: but you bothered me. They can see. I just figured, well,
4:20
Speaker 2: there's nothing wrong with her. I knew a little bit
4:23
Speaker 2: about her spruns, and to me, it met they couldn't
4:26
Speaker 2: coop all. Ever, I didn't do more research because they
4:29
Speaker 2: all told me that she was fine. So I figured,
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Speaker 2: she's pooping with this depositories and it's got nothing to
4:35
Speaker 2: do with that. That's a different word. She was early.
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Speaker 2: She was my earliest baby. And when she was five
4:42
Speaker 2: days old, they told me that I needed to get
4:45
Speaker 2: back to the hospital. I had just gotten home from
4:47
Speaker 2: the hospital, but to me, I needed to get back
4:50
Speaker 2: something was wrong. I went back and she was throwing
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Speaker 2: a I think just essentially like stomach file and just
5:00
Speaker 2: so they had run a tube down her throat. They
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Speaker 2: ambulanced her to a hospital an hour and a half away,
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Speaker 2: and there they found out that she had any sea.
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Speaker 2: She had gotten an intestinal infection because she, I mean, truthfully,
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Speaker 2: just was not booping properly and the food that was
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Speaker 2: going in just wasn't coming back out the way that
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Speaker 2: it was supposed to. So they started her on antibiotics,
5:27
Speaker 2: and they stopped her feeds and started feeding her with
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Speaker 2: an ivy and she was like that for a per
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Speaker 2: pretty long time. It was I believe fifty days before
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Speaker 2: they tried her on a feed again, and kind of
5:43
Speaker 2: as soon as they did tie her on a feed,
5:46
Speaker 2: her belly just got so swollen so fast. They did
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Speaker 2: her iliostomy creation. The day after her iliostomy creation, she
5:56
Speaker 2: had a pretty decent prolapse her mucus ficula, so they
6:01
Speaker 2: had to redo it, which is always no fun. And
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Speaker 2: then they sent her in a helicopter to an even
6:10
Speaker 2: bigger and even farther away children's hospital, saying that they
6:15
Speaker 2: wanted to do some sort of surgery on her now
6:19
Speaker 2: that it would be exploratory. They would have to get
6:23
Speaker 2: in there and then see what they could find, and
6:25
Speaker 2: it would take a long time. So we'd said, okay,
6:28
Speaker 2: we'd rushed, we'd chased the helicopter pretty much, because by
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Speaker 2: the time we got to the hospital that she was
6:35
Speaker 2: originally at, they said, well she got moved to three
6:38
Speaker 2: minutes ago. That helicopter just took off, so we went
6:40
Speaker 2: driving after it. We got up to the bigger hospital,
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Speaker 2: the children's hospital in Denver, and she's just peacefully sleeping
6:48
Speaker 2: with her lights off, and we said, okay, what are
6:50
Speaker 2: we doing? And they said, oh, I don't know. Did
6:53
Speaker 2: they want us to do a surgery. We'll meet with
6:55
Speaker 2: the surgeons tomorrow. We'll see. So we said okay, So
7:00
Speaker 2: we sat, we fell asleep, and then the surgeon came
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Speaker 2: in and he said, no, we'll do a surgery in
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Speaker 2: four or five years. Do you guys want to go home?
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Speaker 2: If we didn't even know, we didn't even think go
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Speaker 2: home because she had she had just got an iliostomy
7:16
Speaker 2: creation a week earlier. We didn't think that she was
7:20
Speaker 2: up to her feeds yet because she wasn't quite. I mean,
7:23
Speaker 2: we know that they had removed her oxygen, but go
7:26
Speaker 2: home after we just got to this huge hospital like
7:30
Speaker 2: we just got here, and I said, yep, go home.
7:34
Speaker 2: So we went home for a second grand ballar, you
7:37
Speaker 2: know stuff, and then we went up to the hospital.
7:40
Speaker 2: We had to stay for four days to you know,
7:42
Speaker 2: kind of learn how to do her ostomy and her
7:45
Speaker 2: irrigations and everything. And that was honestly pretty hard. I
7:51
Speaker 2: have I think eighty notes in my phone from that
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Speaker 2: little Nicky's stay of trying to remember how to do everything,
8:00
Speaker 2: and she was on an antibiotic as well, because they
8:04
Speaker 2: just I guess, have to keep the antibiotic for several
8:07
Speaker 2: months after the infection is gone, just to make sure.
8:10
Speaker 2: I think it's like a three month standard. So bring
8:13
Speaker 2: her phone. We have no idea what to do with
8:17
Speaker 2: this baby. I had two other babies that they and
8:21
Speaker 2: they loved to eat, and all they loved was to eat,
8:24
Speaker 2: and they pooped and they pooped, and they beat and
8:26
Speaker 2: they ate. But this baby, she's tiny, so she looks
8:32
Speaker 2: too like she's a newborn, but she's not. She's three
8:36
Speaker 2: months old. She acts like a three month old baby,
8:40
Speaker 2: but she looks like a newborn. I found out pretty
8:45
Speaker 2: quickly that she could not lay flat on her back.
8:48
Speaker 2: When she laid flat on her bag, she could spit
8:51
Speaker 2: up from one side of her room to the other side.
8:55
Speaker 2: Wow s, yeah, she she does it almost every time.
9:02
Speaker 2: So we figured out now laying on the back, and
9:06
Speaker 2: I keep testing it too. Think she's gonna grow out
9:08
Speaker 2: of it, but she has not grown out of it.
9:12
Speaker 2: So she has to sleep sitting up. So I got,
9:16
Speaker 2: you know, several ways to set her up, a baby chair,
9:18
Speaker 2: a baby swing, a little baby rocking chair or whatever.
9:23
Speaker 2: It's all good, but you know, I'm really fighting with
9:27
Speaker 2: the brand that I was using for her ostomy bags.
9:31
Speaker 2: They didn't do anything. They didn't hold a single ounce
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Speaker 2: of liquid. They were always falling off. They didn't even
9:39
Speaker 2: act like they were sticking to her. So I was
9:42
Speaker 2: getting medical tape and just taping it on. And I
9:45
Speaker 2: couldn't afford to get onto a website find a different
9:49
Speaker 2: brand and just order it. That wasn't going to be possible.
9:52
Speaker 2: I needed her insurance to do it. So I posted
9:55
Speaker 2: on Facebook and somebody on my friend's list had heard
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Speaker 2: the word hirshbruns before and she saw ilios to me,
10:04
Speaker 2: so she said, oh, join the join the group, Join
10:07
Speaker 2: the group. So I joined the group. I plose my daughter.
10:09
Speaker 2: I say, I don't know what I'm doing. You could bad, slow, stay,
10:13
Speaker 2: I'm scared. And they said, whoa whoa, whoa who First
10:17
Speaker 2: of all, you call this phone number, you send an
10:19
Speaker 2: email to hear. Look at what I did with my son.
10:21
Speaker 2: Now I had those backs. Now those suck. Do these ones?
10:24
Speaker 2: And I said okay. So I got in contact with
10:30
Speaker 2: the representative of a different hershprungs or of a different
10:33
Speaker 2: ostme company, and they sent me samples and I felt
10:38
Speaker 2: like I was in heaven because after about four months
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Speaker 2: of a bag never staying on, she's having four or
10:45
Speaker 2: five six bad changes a day. I put a bag
10:48
Speaker 2: on and it didn't leak until day six. Ooh, that
10:55
Speaker 2: was my favorite thing ever. I called my insurance. I
10:58
Speaker 2: said pretty please. They said, okay, so no, we get
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Speaker 2: pin new bags. It took me a while to figure
11:07
Speaker 2: out with the new wafers because it's a completely different system.
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Speaker 2: But once I got it, I do get her bags
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Speaker 2: to hold five or six days now, and I thought
11:15
Speaker 2: people were making that up when they said five or
11:18
Speaker 2: six days, but she holds. She has prolapsed twice now.
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Speaker 2: One was a parental user error. We didn't even figure
11:30
Speaker 2: that there's not a place that you could touch her
11:32
Speaker 2: on her stomach because we had other kids. So my
11:36
Speaker 2: husband he grabbed her around the mid section so that
11:40
Speaker 2: he can get the chuck out from underneath her and
11:44
Speaker 2: put down a bad one because I guess it was wet.
11:47
Speaker 2: It's just keeps the changing table dry and stuff. And
11:51
Speaker 2: he had her and he set her back down, but
11:53
Speaker 2: just that pressure popped that stoma right out. I think
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Speaker 2: we prolapsed about six centimeters that time. No fun we sugared,
12:03
Speaker 2: we pressure, we looked at up, we got some a
12:07
Speaker 2: little cooling pack, and everything we did, it just kept
12:11
Speaker 2: coming at us. So we had to take her up
12:15
Speaker 2: to the children's hospital and they asked us things like
12:19
Speaker 2: have you tried to push it in yet? I said yes.
12:23
Speaker 2: So they tried, and of course they also cannot get it,
12:27
Speaker 2: and they, I believe, brought in a surgeon to try
12:31
Speaker 2: one more time, and when he couldn't get it in,
12:34
Speaker 2: then they sedated her and they had her under pain medication,
12:38
Speaker 2: and then they finally got it. And I was asking
12:42
Speaker 2: them like, now that this has happened, can it just
12:45
Speaker 2: happen again? Will it just pop back out? And they're saying, well,
12:49
Speaker 2: you know, there's always a possibility that it'll pop back out,
12:53
Speaker 2: but you know, not necessarily. It looks pretty good to me,
12:56
Speaker 2: So I said, okay. So so I go about my business.
13:02
Speaker 2: I had her in a chair in her room and
13:07
Speaker 2: she starts coughing. So I immediately run over because I think
13:10
Speaker 2: anytime that anything touches her she's kind of prolapse again.
13:14
Speaker 2: So she starts coughing, I unbuckle her, I check and
13:17
Speaker 2: I see it's dating a little bit bigger. I said no, no, no,
13:22
Speaker 2: put the hands on it. The bit again. It's said
13:24
Speaker 2: to keep it cold. So that's what I did, is
13:26
Speaker 2: I just grabbed a little cold washcloth and I stuck
13:29
Speaker 2: it on it. I checked a little while later and
13:32
Speaker 2: it seemed fine. So Thankfullyria, I had a massive prolapse again.
13:38
Speaker 2: But no, one of what we're looking at right now
13:40
Speaker 2: is that they're thinking when she's h three four, when
13:46
Speaker 2: she's potty trained, they'll look into her surgery and see
13:51
Speaker 2: what we can do there. She's gonna need to be
13:54
Speaker 2: able to be potty trained for it to wear a
13:56
Speaker 2: gross should burn of course. So and then in the meantime,
14:02
Speaker 2: we're just struggling and fighting with her nutrition. She's nine
14:07
Speaker 2: months old. She doesn't she doesn't sit up yet. She's
14:10
Speaker 2: getting really close and she will. She'll start eating by
14:16
Speaker 2: mouth with her with her spoon, and then she'll stop,
14:19
Speaker 2: and then she'll do it again. So we're just working.
14:24
Speaker 2: I mean, she's not severely underweight or anything. She's just
14:28
Speaker 2: not really gaining any right now. But she doesn't seem
14:33
Speaker 2: unhealthy and her doctors don't seem scared, so right now
14:37
Speaker 2: it seems like she's doing all right. We just have
14:40
Speaker 2: a little while to hold on here before something else happens.
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Speaker 1: Yeah, that's but that's so good to hear. That's so
14:47
Speaker 1: good to hear that she's she's doing really well. And
14:49
Speaker 1: I'm what a fascinating, fascinating story as well. And I'll
14:54
Speaker 1: just pick up a couple of bits just on the
14:58
Speaker 1: the the bags and the the heliostomies. And I've seen this,
15:03
Speaker 1: I mean, I mean even ever since I had my stoma,
15:06
Speaker 1: which was thirty odd years ago. The bags that are made,
15:11
Speaker 1: are they still adult sized bags or do they make
15:15
Speaker 1: smaller ones?
15:17
Speaker 2: They do make smaller ones, and that was actually kind
15:20
Speaker 2: of our problem. They have given her a creamy bag
15:26
Speaker 2: in the hospital and then they moved her up to newborn.
15:29
Speaker 2: But by the day she came home from the hospital,
15:31
Speaker 2: she wasn't a newborn. She was beyond the weight limit
15:35
Speaker 2: for the bag. She was three months old, so I
15:40
Speaker 2: needed a bigger size bag. It was actually really cool
15:44
Speaker 2: it's available in the bag now. I've seen how they
15:46
Speaker 2: have creamy and then newborn, then they have toddler bags,
15:51
Speaker 2: and then children age bags, and then into adults and
15:54
Speaker 2: then the adult bags. You see that they'll have like
15:57
Speaker 2: adults small or adult medium? Are they up to like
16:00
Speaker 2: adult extra extra large for heavier people or people with
16:05
Speaker 2: heavier outputs. They really do have a variety in the bags.
16:08
Speaker 2: I just had the wrong one.
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Speaker 1: Yeah, Oh, that's brilliant. That's so good to hear, because again,
16:15
Speaker 1: I mean, it's it's really good that technology, I guess
16:20
Speaker 1: technology is a word for this has moved on to
16:23
Speaker 1: the point where it's not just sort of they try
16:27
Speaker 1: and put the same try and treat everybody the same.
16:31
Speaker 1: I think because it is it is such a it's
16:36
Speaker 1: such a specialized condition, and there's so many different variants,
16:42
Speaker 1: and I know that hospitals don't necessarily talk in terms
16:45
Speaker 1: of short segment hirshprungs or long second hirshprungs, and I
16:48
Speaker 1: think they tend to talk in more these amounts of
16:52
Speaker 1: centimeters of the intestine don't have ganglion cells. Was that
16:58
Speaker 1: explained to you in that way or did did they
17:00
Speaker 1: use words like short segment and long segment?
17:04
Speaker 2: So at first, I believe the first word we heard
17:07
Speaker 2: was a long segment at her first nicku, But when
17:11
Speaker 2: they moved her to the second niku, they told us
17:14
Speaker 2: that because they had taken a biopsy from UH where
17:21
Speaker 2: they did her iliostomy creation. They can tell us that
17:23
Speaker 2: that was it looked like a place where right right
17:28
Speaker 2: where the ganglion cells met the eight A giglionic cells,
17:31
Speaker 2: So they think that that's where her heirsprungs ended, which
17:35
Speaker 2: which they're thinking ben means that she is total colonic
17:40
Speaker 2: with what they The word they used was extended segment,
17:43
Speaker 2: so all the way up from her ilium through her
17:47
Speaker 2: entire colon, that's what they're thinking. So we're not one
17:51
Speaker 2: hundred percent sure yet. Her symptoms were not really consistent
17:56
Speaker 2: with having no healthy intestine, but we did some hirshprungks
18:00
Speaker 2: tissue all the way up from her her early ostoy creation.
18:03
Speaker 2: So her file says total colonic with extended segments. I
18:09
Speaker 2: know that extended segment and long segment are the same thing,
18:12
Speaker 2: and that just different hospitals say different words, but I
18:17
Speaker 2: did not get any actual measurements. I just got those
18:21
Speaker 2: words on there.
18:23
Speaker 1: That's interesting. That's really interesting because I speak to people
18:28
Speaker 1: all over the world, and especially in America and the UK,
18:32
Speaker 1: they've started to use that sort of numbers system of
18:36
Speaker 1: X amount of centimeters, X amount of the large intestine
18:44
Speaker 1: or small intestine or both are affected, but interestingly kind
18:49
Speaker 1: of went with the total colonic way of saying it.
18:55
Speaker 1: That's that's interesting because I thought it would be more
19:00
Speaker 1: the other way around. But it's yeah, very very interesting,
19:03
Speaker 1: very interesting. But I guess also possibly easier to know
19:08
Speaker 1: that whether it's your segment longster mean you then have
19:13
Speaker 1: more of an idea rather than say X amount of sentime.
19:16
Speaker 1: Does that make it easier or trickier? I don't know.
19:19
Speaker 2: Yeah, I mean that's what I thought when I did
19:22
Speaker 2: hear when I did start seeing people talk in centimeters
19:25
Speaker 2: on the Facebook groups, I was just thinking, I kind
19:28
Speaker 2: of don't know what that means though, because I know
19:30
Speaker 2: how long that would be. But I know that your
19:32
Speaker 2: intestines they're not a straight line, so I don't know
19:35
Speaker 2: how much you have. I don't know how much that
19:38
Speaker 2: is of it. I do know that I was told
19:42
Speaker 2: my daughter had it's thirty three percent creation, which I
19:48
Speaker 2: think they were saying met but it was about thirty
19:52
Speaker 2: three percent of the way through her digestive system that
19:55
Speaker 2: they created it. But I actually don't know how ma
20:00
Speaker 2: radical that.
20:00
Speaker 1: Is, No, No, absolutely absolutely, And I know there was
20:07
Speaker 1: just a couple of other points you talked about, and
20:10
Speaker 1: I know there's one one big point in particular, the
20:13
Speaker 1: miscommunication between both hospitals or hospital staff and yourself. And
20:23
Speaker 1: because I find that it's something that is so important
20:29
Speaker 1: and that communication and whether the child has passed theconium,
20:36
Speaker 1: and it's something again that I mean, four thousand, nine
20:42
Speaker 1: hundred and ninety nine people out of five thousand won't
20:45
Speaker 1: have to worry about because they will just pass the
20:47
Speaker 1: the codium. But that one in five thousand, give or take,
20:51
Speaker 1: where they do have hirshprungs and they haven't passed.
20:57
Speaker 2: I guess.
20:59
Speaker 1: That was to be incredibly difficult for them when they say, oh,
21:03
Speaker 1: they have, but then your child hasn't passed mccenye.
21:09
Speaker 2: Yeah, I very much do think that if my hospital
21:15
Speaker 2: staff where my daughter was born were just possibly more
21:20
Speaker 2: well trained or more interested in their jobs, that my
21:24
Speaker 2: daughter may have not ever gotten her intestinal infection. I
21:28
Speaker 2: knew the word hirsh runs. I knew that word. I
21:31
Speaker 2: knew kind of what it meant. Had I known my
21:34
Speaker 2: daughter didn't poove, I of course would have said it.
21:38
Speaker 2: But I was also dealing with severe mental health problems.
21:42
Speaker 2: And what I don't understand is how I could be
21:48
Speaker 2: calling out to leave the hospital with still preoclamtic blood
21:53
Speaker 2: pressure just because I'm scared. I didn't want to spend
21:57
Speaker 2: the night. I don't I don't remember what I was feeling,
21:59
Speaker 2: and the host could just let me how they couldn't
22:02
Speaker 2: bring in mental health resources. Why they didn't make me
22:06
Speaker 2: sign papers saying that it's against medical advice, They just
22:10
Speaker 2: let me. I've had three sea sections, three of them.
22:13
Speaker 2: My first sea section I was seventeen years old. I
22:16
Speaker 2: stayed in the hospital for four days. My second sea
22:19
Speaker 2: section was just immediately following my hirshprungs burs just immediately
22:23
Speaker 2: before my hirshprunks baby, I stayed for two days. Never
22:27
Speaker 2: have I ever stayed for you know, fifteen hours, sixteen hours,
22:32
Speaker 2: and I've never I don't hear from other people during
22:35
Speaker 2: the sea section that that's how long they stayed. Their
22:38
Speaker 2: blood pressure was high, but I was, I guess, having
22:41
Speaker 2: some form of panic attack, and so they just thought
22:45
Speaker 2: let me lea. And if I had gotten mental health
22:49
Speaker 2: resources like they should have, they should have sent into
22:53
Speaker 2: their room. I would have been in the hospital with
22:58
Speaker 2: her that she wasn't going to the bathroom, and nobody
23:05
Speaker 2: was communicating from the nursery that I left her in
23:09
Speaker 2: with me with the exactly how she was going with
23:12
Speaker 2: the bathroom just they were saying things like now she
23:16
Speaker 2: is and she did this one on her own. They
23:20
Speaker 2: weren't telling me how often they were doing enemas. But
23:24
Speaker 2: I found out after they moved her to a different
23:26
Speaker 2: Nikkia that for those first five days to get her
23:29
Speaker 2: to move her FeCO matter whatsoever, they were doing in
23:33
Speaker 2: enema every six hours and four suppositories a day. And
23:39
Speaker 2: if they had told me that, I would have thought,
23:41
Speaker 2: well that's too much. If the baby was gonna go,
23:44
Speaker 2: the baby would go. But they didn't offer mental health resources.
23:48
Speaker 2: They didn't communicate properly. And I found out that pretty
23:52
Speaker 2: much every time they got into my little file next
23:56
Speaker 2: to me where I have a specific preference not to
23:59
Speaker 2: have narcotic pay medication so that they can reference that
24:02
Speaker 2: says the word hirshprungs right next to the word men too.
24:07
Speaker 2: It says it I remember, And there's asking me right
24:11
Speaker 2: before I had the baby, when I was getting prepped
24:14
Speaker 2: for my C section, if I was if I had
24:18
Speaker 2: hirshbrungs myself because the heat the anesthesiologist saw it on
24:21
Speaker 2: the thing and he just needs to know to know
24:24
Speaker 2: if I've had any surgeries or whatever like that. Said no,
24:27
Speaker 2: and he said, oh, okay, well that must be you know,
24:31
Speaker 2: some form of genetic Then I said, sure, But if
24:34
Speaker 2: he was able to see that and at least somebody
24:37
Speaker 2: in the hospital knows what that means, how come it
24:39
Speaker 2: was it referenced again?
24:43
Speaker 1: That sounds like a monumental mistake of just people not
24:50
Speaker 1: thinking and people not kind of going Okay, Hirshprungs is
24:56
Speaker 1: mentioned because because you're I guess the You're in a
25:00
Speaker 1: slightly different position than people I speak to or other
25:05
Speaker 1: people I've spoken to, in the fact that you knew
25:08
Speaker 1: what Hirshprung's was. I mean, I speak to so many
25:10
Speaker 1: people who've never had a Hirshprung's baby before, and the
25:15
Speaker 1: word is mentioned to them, and it means absolutely nothing,
25:20
Speaker 1: because it's just you know that they have no idea
25:23
Speaker 1: what it could be. Could it be a foot illness,
25:25
Speaker 1: could it be an arm illness? You know, I mean, Hirshprung's.
25:30
Speaker 1: It doesn't even give a clue away that it's about condition.
25:33
Speaker 1: There's nothing in the there's nothing in the word that
25:36
Speaker 1: says that. So when people say, oh, your child is
25:40
Speaker 1: suspected of hirshprungs or may have hirsprungs, tend to look
25:44
Speaker 1: quite blankly back at them and think, what on earth
25:47
Speaker 1: is that? But you're in a different position where you
25:49
Speaker 1: knew what Hirshbrungs was, you'd even reference that in your notes,
25:56
Speaker 1: and yet still it didn't seem as though it was
26:01
Speaker 1: properly investigated or even thought of. I mean, did they
26:06
Speaker 1: even sort of There's again, classic signs were sort of there,
26:11
Speaker 1: weren't they. The bile, the vomiting, the lack of maconium
26:17
Speaker 1: that you explain, all of the classic inverted comma's signs
26:24
Speaker 1: of hirshprungs. Yet nothing was brought up. I mean that's
26:30
Speaker 1: quite concerning.
26:31
Speaker 2: I guess she landed at the children's hospital because the
26:37
Speaker 2: the hospital she is born at it just doesn't have
26:39
Speaker 2: a Nikki. We live in a small town, so they
26:42
Speaker 2: just moved her up to where there was the first
26:44
Speaker 2: places niki. She got there and I immediately started communicating
26:48
Speaker 2: with those doctors. That was when I got so set
26:52
Speaker 2: that I needed to know if that was hirshbrungs. I
26:54
Speaker 2: finally got back into my test. I you know, I
26:58
Speaker 2: google searched it, learned as much as I could, and
27:01
Speaker 2: I was talking to this surgeon at the children's hospital
27:04
Speaker 2: to see what they thought, and he said, okay, well
27:07
Speaker 2: here's what we'll do is we'll order a suction rectal biopsy.
27:11
Speaker 2: I said, thank you, and then he didn't do it
27:13
Speaker 2: for about a month. I thought. I was born in
27:16
Speaker 2: the middle of November and they didn't suction rectal biopsy
27:19
Speaker 2: here until the day after Christmas, a month.
27:26
Speaker 1: That's that's unbelievable. I mean, again from people have spoken
27:34
Speaker 1: to looking within the first few sort of forty eight hours,
27:39
Speaker 1: sort of a few days maybe to then a month.
27:44
Speaker 1: I mean, how did you how did she cope for
27:51
Speaker 1: a month, you know, not being able to insides working properly.
27:59
Speaker 2: Not well. I have struggled with mental health my entire life,
28:04
Speaker 2: and it gets significant after I've had my three children.
28:09
Speaker 2: I get very very bad postpartum depression. But this time
28:15
Speaker 2: I was told that I was working through postpartum trauma
28:20
Speaker 2: just because the all three of my deliveries were incredibly painful.
28:26
Speaker 2: They were all surgeries and some must follow up surgeries.
28:29
Speaker 2: But by the time my daughter was in the NICU
28:34
Speaker 2: and it had been a month and they still hadn't
28:36
Speaker 2: tested yet. My C section star was still open, and
28:41
Speaker 2: I had a baby at home, an eleven month old
28:45
Speaker 2: baby at home. I could not find the correct way
28:52
Speaker 2: to focus on when they were doing the test, so honestly,
28:59
Speaker 2: to me, and it didn't feel like a month, because
29:02
Speaker 2: none of that time felt like it was as long
29:05
Speaker 2: as it actually was until I got, you know, proper
29:08
Speaker 2: treatment for my mental health. So to me, it felt
29:11
Speaker 2: like as soon as they said they were gonna do it,
29:14
Speaker 2: then they did it. Now looking back, I can see
29:18
Speaker 2: where I have hundreds of notes in my phone from
29:23
Speaker 2: the days that she spent in the NICKU. I continuously
29:27
Speaker 2: took down every single new way to every new X
29:30
Speaker 2: ray to see if she had gotten rid of the infection.
29:33
Speaker 2: And I was talking to them every day about things
29:36
Speaker 2: like when are they going to test her? But my
29:38
Speaker 2: memory now it kind of floated by so much faster
29:43
Speaker 2: than that. She's in the NIKI for seventy fur days
29:46
Speaker 2: and it took thirty forty some days to find out
29:51
Speaker 2: that it was even hershprunks. Oh, and then after that
29:55
Speaker 2: they were talking about scheduling her for a quick pull
29:59
Speaker 2: through procedure that got thrown off the table when her
30:03
Speaker 2: belly got you too full and they had to do
30:06
Speaker 2: her iliostomy, where then they threw away the idea that
30:09
Speaker 2: we were gonna have that pull through because now the
30:12
Speaker 2: heirsprungs it's far too high up. So I never knew
30:16
Speaker 2: what was going on. I tried not to just sit
30:22
Speaker 2: and freak out about it. I had so many other
30:25
Speaker 2: things that I needed to be consistently looking at, and
30:28
Speaker 2: in my head, these people were professionals, and I can
30:32
Speaker 2: see her on the video camera at the NIKO, so
30:38
Speaker 2: I just figured this must be how they're supposed to
30:41
Speaker 2: do all of these things. This must be the way
30:43
Speaker 2: it's supposed to be done. I think they said they
30:47
Speaker 2: didn't do her biopsy because she had an infection, but
30:53
Speaker 2: I'm really not sure because it took them five days.
30:57
Speaker 2: It took her five days to really develop that infection.
31:00
Speaker 2: I feel like we could have had a biopsy before
31:03
Speaker 2: then as well. Like most other Shprung's baby is to have.
31:08
Speaker 1: Yeah, most definitely, most definitely, and obviously that the longer
31:13
Speaker 1: this longer it goes on. I mean, you said seventy
31:15
Speaker 1: four days there, and around forty days to even sort
31:21
Speaker 1: of see the word hirshprungs. The longer that goes on,
31:24
Speaker 1: obviously that isn't going to be any good for you
31:29
Speaker 1: personally as well. Who that's going to be, that's going
31:34
Speaker 1: to be obviously incredibly incredibly difficult. What did you I
31:38
Speaker 1: know you talked about writing notes, and you talked about
31:44
Speaker 1: jotting everything down, every weight, every everything that happened. Was
31:48
Speaker 1: there anything in particular that you did going through that
31:52
Speaker 1: time that really helped you to cope?
31:58
Speaker 2: I think mainly it was away my breast milk. Oh.
32:02
Speaker 2: I did know that when she was first moved to
32:07
Speaker 2: the second hospital that she was never going to be
32:10
Speaker 2: able to drink it. She has a cow's milk protein allergy.
32:14
Speaker 2: And because I have some complicated dietary needs, removing dairy
32:19
Speaker 2: was it possible, But I felt like continuing to pump,
32:23
Speaker 2: continuing to save the milk, to label them. I wrote
32:27
Speaker 2: her notes on the milk that this is when I
32:30
Speaker 2: pumped this. I was thinking about her that I did
32:32
Speaker 2: this one on a video chat with her. I did
32:35
Speaker 2: this one while I was giving her her medication. And
32:38
Speaker 2: then nick you that sort of thing. They all they
32:40
Speaker 2: all say where they came from, they all see something
32:42
Speaker 2: to her, she still will ever be able to drink them,
32:46
Speaker 2: and now I have no freezer space in my garage.
32:50
Speaker 2: I think that it was very helpful because it helped
32:52
Speaker 2: me hold on to this idea that magically she'd be
32:57
Speaker 2: able to have the breast milk one day. And it
32:58
Speaker 2: was the same idea that mattically, she will just stop
33:02
Speaker 2: being sick one day. Magically she'll just feel all better
33:04
Speaker 2: one day. And even though no, we didn't just you know,
33:09
Speaker 2: magic wand the hirshbruns off of her, I watched her
33:12
Speaker 2: start feeling so much better. She has some problems with
33:18
Speaker 2: the spitting up, it's usually just when she lays down.
33:21
Speaker 2: But when she first came home, she looked like a
33:24
Speaker 2: sick baby. She was so thin, she could not tolerate
33:29
Speaker 2: eating as much as she was supposed to. And I remember,
33:33
Speaker 2: I mean crying, asking her if she would please just
33:36
Speaker 2: try to get to the minimum amount that she is
33:39
Speaker 2: supposed to eat, and telling her that I was sorry
33:42
Speaker 2: that she couldn't because I knew she was hungry. She
33:44
Speaker 2: was just so weak.
33:47
Speaker 1: I know.
33:47
Speaker 2: I will make her bottle and she'll grab it and
33:51
Speaker 2: she'll chug it and she'll throw it and she'll say hey,
33:54
Speaker 2: give me another one, so I said. I just told
33:59
Speaker 2: to my husband, yes yesterday when she did that, that
34:02
Speaker 2: that's a long way away from the baby in the
34:04
Speaker 2: Nikki that they said may never eat by mouth. I
34:09
Speaker 2: think she seems a lot better.
34:12
Speaker 1: Definitely. Oh that must be so good to see as well.
34:15
Speaker 1: Obviously talked through a lot of the things that you've
34:19
Speaker 1: been through and that your daughter's been through, and that
34:23
Speaker 1: must be so so good to see that now she
34:26
Speaker 1: is drinking, and now she's you know, not just as
34:30
Speaker 1: he said, taking the bare minimum, but actually, you know,
34:35
Speaker 1: drinking like any other baby would.
34:39
Speaker 2: I guess she's hungry, that's for sure. She she'll take
34:45
Speaker 2: some bites of food and seem really excited about it,
34:49
Speaker 2: and then just like I think this completely lose the
34:52
Speaker 2: ability to eat again, act like she's choking if you
34:55
Speaker 2: try to feed her. But I really don't feel like
34:59
Speaker 2: that has to do with her hirshbruns. I think that
35:02
Speaker 2: I have a very particular little girl on my hands,
35:05
Speaker 2: and she needs to be faced the correct direction, she
35:08
Speaker 2: needs to be reclined the correct amount, and sometimes she
35:12
Speaker 2: just doesn't want to eat something. It, you know, is
35:16
Speaker 2: hard sometimes because I know she's at the eating age,
35:19
Speaker 2: but the formula that she's on, it's an extremely high
35:23
Speaker 2: caloric density because she's been so light for so long,
35:29
Speaker 2: and it has added iron and things like that, and
35:32
Speaker 2: so if she's not ready to just really eat solid
35:36
Speaker 2: foods yet, she will be fine. It was fun watching her.
35:41
Speaker 2: She got stuck at her diaper size and a clothing
35:45
Speaker 2: size for just the longest time. No weight went on
35:49
Speaker 2: her body. I just struggled to keep her from losing weight,
35:53
Speaker 2: and I ran through a load of laundry. It had
35:57
Speaker 2: gotten really hot outside, so I usually just leave my
35:59
Speaker 2: girls and a diaper throughout the day because it's and
36:03
Speaker 2: nobody's at my house. So finally it's been three four days,
36:07
Speaker 2: I go get my load of launder because I'm gonna
36:09
Speaker 2: dress my girls, and I grab a onesie. I try
36:12
Speaker 2: to put it on Aurora. That doesn't fit. So I
36:15
Speaker 2: go into the storage of her older sister's onnesies. I
36:18
Speaker 2: go up one size, put it on her. That doesn't fit.
36:22
Speaker 2: I go up two sizes. Now, finally that fits. That
36:26
Speaker 2: girl skyrocketed on four pounds and two clothing sizes in
36:33
Speaker 2: about a week and a half. That's so good to hear.
36:38
Speaker 1: I mean that must have been. Yeah, I mean that
36:41
Speaker 1: must have been really surprising. I guess as well.
36:45
Speaker 2: Yeah, she I think she overheard me calling her small
36:49
Speaker 2: the day before, and so when she went to bed
36:52
Speaker 2: that night she could use the screw.
36:56
Speaker 1: That is one thing about us people with hirshprungs. We
37:00
Speaker 1: are very resilient. We are very stubborn to a certain
37:06
Speaker 1: extent because we have been through a lot of pain,
37:11
Speaker 1: medication and surgeries. And one thing you will you will
37:17
Speaker 1: tend to find, it's like anybody else I've met with hirshprungs,
37:21
Speaker 1: is that pain tolerance will be pretty high. And then yeah,
37:27
Speaker 1: and then you know, with that you get a lot
37:29
Speaker 1: of a lot of resilience as well. But yeah, so
37:33
Speaker 1: that would yeah, that would kind of be good to
37:36
Speaker 1: look forward to the future.
37:39
Speaker 2: Yeah. She is the happiest baby that I've ever seen.
37:42
Speaker 2: I've been around tons of babies. I've got several of
37:45
Speaker 2: my own, and I've got several nieces nephews. There's always
37:49
Speaker 2: a baby somewhere. She is the happiest baby when she
37:53
Speaker 2: laughs more than any other baby. She smiles more than
37:57
Speaker 2: any other baby. I know that even with her actual siblings,
38:01
Speaker 2: they needed something to smile at you needed to be
38:04
Speaker 2: doing something funny or showing them something funny. But Aurora,
38:09
Speaker 2: she will smile just because she saw you, and oh
38:12
Speaker 2: boy does she love you? And oh boy, is she
38:14
Speaker 2: just so happy. She'll lay in her swing and just
38:18
Speaker 2: be perfectly relaxed about to go to sleep, and I'll think, oh,
38:21
Speaker 2: her swing stop, so I'll start it, and oh, now
38:23
Speaker 2: she's so happy because somebody started her swing. She is
38:27
Speaker 2: just the happiest, happiest baby. Everything's funny for some reason,
38:32
Speaker 2: even when we're not making jokes. She thinks her big
38:34
Speaker 2: brother is so funny. He'll come out and he'll just say, oh, hi, Aurora,
38:39
Speaker 2: what are you doing? And she's just laughing. Her brother
38:42
Speaker 2: is a comedian. That's brilliant.
38:46
Speaker 1: Oh that's so so good to hear. And I guess
38:50
Speaker 1: it kind of leads into my final question. I know
38:54
Speaker 1: you've just spoke a little bit there about how she is,
38:57
Speaker 1: how she's getting on, and I guess, sort of both
39:00
Speaker 1: medically and non medically, what do you see in the
39:06
Speaker 1: future for Aurora.
39:09
Speaker 2: I have an idea of a couple of upcoming surgeries
39:13
Speaker 2: that she's gonna be much older before, so I for
39:18
Speaker 2: that I try not to put too much of a
39:20
Speaker 2: picture in my mind. That way, I can just see
39:24
Speaker 2: it when we're there. I don't want to picture it wrong,
39:27
Speaker 2: but I do know that when it comes to just her,
39:31
Speaker 2: she's gonna be fine no matter what they do. She's
39:34
Speaker 2: going to be the kind of kid that makes the
39:37
Speaker 2: every friend in preschool. I'm not worried about her. I
39:42
Speaker 2: can tell it as a baby here that she is
39:46
Speaker 2: going to be a very kind child. You can see
39:49
Speaker 2: it on her. She has very kind eyes. And you know,
39:53
Speaker 2: when I'm changing her system and she's got a burn
39:57
Speaker 2: on her that I'm sure hurts, she's Oh, it's just
40:00
Speaker 2: looking straight at me like she's trying to tell me
40:03
Speaker 2: that I'm going to be okay. For seeing this, I
40:07
Speaker 2: think no matter what happens with her and what surgeries
40:10
Speaker 2: they do, Aria is going to be okay.
40:14
Speaker 1: Brilliant. Oh well, that's absolutely fantastic, And thank you so
40:18
Speaker 1: so much for coming on for sharing Rawer's story, being
40:23
Speaker 1: so open as well about your journey, because I didn't guarantee, again,
40:29
Speaker 1: having spoken to many mothers, you are not alone in
40:34
Speaker 1: that situation of feeling sort of a little bit helpless,
40:39
Speaker 1: a bit like you know what on earth? Is going on,
40:43
Speaker 1: and thank you so much for being brave enough to
40:46
Speaker 1: share that, because undoubtedly it will I get several mothers
40:53
Speaker 1: who listen to this show, and undoubtedly Cyril may have
40:57
Speaker 1: gone through similar similar situations. So again I wish, I
41:03
Speaker 1: wish you Aurora and the rest of your family the
41:08
Speaker 1: very very best for the future. Thank you, Thank you
41:16
Speaker 1: for listening and being part of this growing community. If
41:19
Speaker 1: you have enjoyed the episode, don't forget to subscribe, leave
41:22
Speaker 1: a review, and share it with someone who might need it.
41:25
Speaker 1: You can connect with us on social media via Instagram, Facebook,
41:29
Speaker 1: and TikTok under the name Tom's Hirshprung's Podcast.
41:33
Speaker 2: See you next week.