Description:
Maddie and Macka take us along on their journey to parenthood as they discovered their daughter Maya was diagnosed with Cystic Fibrosis. At the time of the recording, Maya is only 6 months old. Throughout the episode, you will hear how Maddie and Macka had to uproot their lives for 10 weeks to live in a different city so Maya could get the support she needed immediately after birth. This support included a necessary surgery only 12 hours after Maya was born.
birthasweknowitpodcast.com/84
Disclaimer: This podcast is intended for educational purposes only with no intention of giving or replacing any medical advice. I, Kiona Nessenbaum, am not a licensed medical professional. All advice that is given on the podcast is from the personal experience of the storytellers. All medical or health-related questions should be directed to your licensed provider.
Want to hear another birth story that talks about their journey through postpartum depression? Tune into 38-Athena Estelle-Vaginal Birth-Cecilia-Delivered: Finding Victory After Postpartum Depression Podcast
Resources:
- Perinatal Support of Washington: https://perinatalsupport.org/
- Postpartum Support International: https://www.postpartum.net
- Preeclampsia Foundation: https://preeclampsia.org/
- Grow NZ: https://nz.growapp.org/
- Ronald McDonald House Charities: https://rmhc.org/
Definitions:
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Transcription of Episode 84:
Intro 0:08
Welcome to Birth As We Know It, a podcast that is dedicated to recognizing the many different ways that birth unfolds. I am your host, Kiona Nessenbaum. I have experienced birth as a doula, a student midwife, a birth assistant, and as a mother of three amazing children of my own. After attending over 140 births, I’ve realized that each birth experience is truly unique. So make sure you subscribe and join me as we are guided through many different birth experiences through the lens of the storyteller. Please be aware that some of these stories can be triggering to hear. So feel free to pause, take a breath, and come back and listen whenever you’re ready. With that said, let’s prep ourselves to dive deep and get detailed about what really happens in the birth space.
Disclaimer 1:05
As a reminder, this podcast is intended for educational purposes only and has no intention of giving or replacing any medical advice. All advice that is given on the podcast is from the personal experiences of the storytellers. All medical or health-related questions should be directed to your licensed provider.
Kiona 1:26
Before we dive into this episode today, I have an exciting announcement. Your girl, Kiona Nessenbaum, is back in the birth space as a birth doula. So if you are local to the greater Seattle area and in need of some birth doula support, please reach out. I would love to support you as you transition into parenthood. To learn more about this service, you can go
birthasweknowitpodcast. com/doula. Another service that I’m offering is called labor prep from a doula perspective. Now this can be done virtually or in person. So it’s also available to those that are not local to the greater Seattle area. What this is, is a two hour info session where you and I connect and talk about the best ways to prep for your labor and to inform you of what your options are. We also touch on how you can cope throughout labor, how partners can support you as you are laboring, and we touch on postpartum. So if you want to learn more about this service, go to
birthasweknowatpodcast. com/labor prep. All right, let’s dive into this episode.
Hello, everybody, and welcome back to the Birth As We Know It podcast. Today, I’m going to be talking with Maddie and Macka Palmer, and they are going to be talking about their birth experience with their daughter, Maya. So, welcome, Maddie and Macka. Thank you for coming on.
Maddie 2:47
Thank you for having us.
Macka 2:49
Good to be here.
Kiona 2:51
I’m excited to get into your story because you guys put in your guest request form that there were just a couple of issues. One was, Maddie, you developed preeclampsia.
Maddie 3:01
Yes.
Kiona 3:02
And two was, Maya was born with cystic fibrosis. So, we will be talking about the details of that. But before we dive into that, I would love to dive into the conception process. Was Maya planned? Did you guys try really hard for her? Tell me all the details on that.
Maddie 3:20
Maya was planned. She was planned only a few weeks before she was conceived. We’d recently had a nephew about a month prior. And after hanging out with our nephew, we thought, oh, we could have one of those. And so, within the next two weeks, we were pregnant. She was planned, but it happened faster than expected.
Kiona 3:45
Right. Yeah. I think that that’s actually pretty awesome
Maddie 3:50
Yeah.
Kiona 3:50
because some people have quite a hard time,
Maddie 3:54
Yeah.
Kiona 3:54
right, conceiving.
Maddie 3:55
Yeah. And we felt really lucky when we realized that we were successful the first try. We felt really grateful for that because we have friends and family who have been, you know, trying for a long time.
Kiona 4:07
Did you have to kind of navigate those emotions with the friends and family that have been trying for a long time?
Maddie 4:14
Yes. did a little bit.
specifically, a close friend of mine who had been trying for years, I guess I just felt a bit anxious about how I would approach it. So, I didn’t want to, her feel bad about it not being able to happen for her at the moment. I didn’t want to feel like I was gloating, but obviously we were really excited. So, we did have to navigate that carefully and we had to talk about how we were going to approach that with a couple of different people as well. Because we didn’t share initially on social media for a while. mainly because of that reason, to be fair. And so, it was more of having these one-on-one conversations with people that were, of course, excited for us, but we just needed to navigate it with caution.
Kiona 5:03
Right, So, Macka, how did you feel when you found out that you guys were expecting a little bean?
Macka 5:10
it exciting. Like, I think we had about and then I was sort of more, let’s not chase it and just let things happen. So, there’s not so much which then ultimately, could lead to stress and anxiety of if it didn’t happen. So, I think that maybe helped as well. And then, obviously, when Mads did the test and it came back that she was very exciting times. I guess a little bit nervous, but, yeah, ultimately, cool experience to go through.
Kiona 5:53
yeah, I think so, too. I think that, you know, having that kind of moment of realization of, whoa, we just did a thing. It was fun. Creepy,
Maddie 6:02
Mm-hmm.
Kiona 6:03
baby.
Macka 6:05
But
Kiona 6:06
now we actually have a baby. So, like, how is that going to change our lives and how will we be as parents, you know?
Maddie 6:14
Yeah, and we actually filmed ourselves reading the test because I… had a feeling and I said to Macka I said I feel like I could be pregnant um and so I set up a camera when I did the test and then we went back in to read it together and you can you can see the mixture of emotions on our face you can see the pure shock and disbelief but also the like the readiness to love and the outpour of excitement and all of those things it’s a bit of a emotional bundle of different like a mess really but really beautiful at the same time so I’m glad that we’ve kind of got that forever to look back on and see and even show Maya when she’s older like this is the moment we found out that you were going to be a part of our lives
Kiona 6:59
that is so awesome did you end up posting that video on social media at any point once you made the announcement
Maddie 7:06
yeah we did but later down the line actually just recently we posted it as uh one year ago this is when we found out a year ago which you know obviously after she was born and things we we didn’t post it when we announced her but we posted it a year later
Kiona 7:24
yes so Maddie tell me about what your pregnancy was like like did you have a lot of symptoms or were you like one of those people that was like oh my god I love being pregnant life is beautiful I’m glowing like how did you feel
Maddie 7:39
well I thought I was gonna be one of those people I was really excited to be pregnant um I thought I’m gonna style this bump so cool I’m gonna have this glowing skin I didn’t have the smoothest pregnancy I was pretty sick from the get-go which is initially how I thought that that’s why I suggested we do the test because I was feeling not myself I was feeling constantly nauseous nauseous and things and that nausea and morning sickness morning sickness that lasts all day lasted for about 16 weeks so I work from home luckily and so I was able to still just kind of drag myself out of bed and get to my computer and do some work I wasn’t able to go to the gym or anything Macka and I are both personal trainers so that was big um task for for me to have to step away from that I didn’t do too much in the first kind of trimester in a bit because I was unwell and then come middle of the second trimester I felt like I had those weeks to really enjoy my pregnancy I was feeling much better I was showing that I was actually pregnant and not just put on weight and we were going out with friends more and things and I felt like for a short period of time I really got to enjoy being pregnant and kind show it off and and remember it in a good way and then come third
trimester when we were informed about the complications in our pregnancy we had to relocate cities then I went I had Maya early anyway so I guess I was kind of robbed that last bit of my pregnancy um but there’s definitely about seven or eight weeks that I remember feeling like really amazing with it it was it was a roller coaster to put it shortly
Kiona 9:32
you guys are located in New Zealand and so you had relocate from one place to the other where was your start place that didn’t have the resources that you needed and where did you go
Macka 9:44
so we are from the south of New Zealand so right down the bottom a place called Dunedin um and we had to relocate probably five or six hours north up to Christchurch where they have
better facilities some people that are a little bit more
specific in what baby needed at the time
Maddie 10:14
in utero we knew that our baby was going to need multiple surgeries when she was born and where we live although is a big city on the scale of New Zealand um it doesn’t have any pediatric surgeons or anything like that So we were relocated to a bigger city that has access to paediatric surgeons. And like Macka said, just more resources that are specific to what our baby was going to need. And what we call, in New Zealand, it’s called NICU, Neonatal ICU. bigger, more resourced version of that is where we needed to be. So that was the cause behind the relocation.
Kiona 10:54
we have the abbreviation here, NICU, and we pronounce it NICU.
Maddie 11:00
Oh, yeah.
Kiona 11:01
yeah, we have that. And we also do have people that have to relocate just not as far. Because, you know, there’s a lot of hospitals in our area. And there’s some, like, there’s different levels of NICU. so when someone needs to relocate, usually it’s like about 45 minutes away versus five or six hours. So I am curious as to how your lives had to change. Because you guys relocated for 10 weeks, right?
Maddie 11:29
Correct, yeah. we obviously had to stop working. at this stage, I was 30 weeks pregnant. And I had to stop work altogether, obviously. Macka had to stop work so that he could come with me. We didn’t have any family where we were going. So it was really just a journey for the two of us. The health system in New Zealand helped support us financially in the transition from Dunedin to Christchurch. And there’s wonderful organisation here. I don’t know if it’s in America. And it’s called the Ronald McDonald House Charity, or RMHC. And they are share houses in the main cities of New Zealand where families can stay if they needed to be close to a hospital pregnancy or for a child under the age of 18. So we were lucky enough to get a spot in the Ronald McDonald House in Christchurch, which is just a five-minute walk from the hospital. And that in itself was its own experience. We were living in a house with many kids who had different illnesses, different cancers. We were living with other pregnant parents waiting to have a baby in to NICU. And all sorts of people we met on our journey. And you have shared dinners, you have your own room, there’s a shared lounge, all of that kind of thing. So we packed what we needed into a couple of suitcases and relocated into our little room in the Ronald McDonald House. And we just kind of waited. So we tried to look at it as a bit of a holiday for the first couple of weeks while waiting for baby to arrive. And then obviously when things went a bit south with the preeclampsia and Maya arriving early, things changed from then as I was living in the hospital for a couple of weeks. And by four weeks on, Macka had to go back to work, so I was living in Christchurch on my own. And it was quite complicated. And it was sad to be away the people that we love and the people that would be there every day supporting us. But also I found that me personally, I was dealing with a little bit of grief. Grief of what I thought pregnancy and birth would be like at the end. Grief of, giving birth to what they would call a healthy child. And I did feel like I would prefer to be, you know, just alone in that time, alone with Macka, while I kind of come to terms with it myself. So it was, although it was hard being away from our family, it kind of eliminated any background noise. And it just gave us time to come to terms with what was happening and really get to know our baby one-on-one while we figured out what life was going to look like for us.
Kiona 14:20
Yes, sounds like it’s just hard in general, because when you’re at the Ronald McDonald house, you are surrounded by others who need that space because there’s a medical issue or concern that’s happening. And all of those people are bringing their own emotions and sadness and processing of like what their life looks like, what to expect, how to take care of things. And that’s really heavy, right? That’s really heavy. And I totally understand the need to process with just you and Macka together about what is happening, right? Like what has happened,
Maddie 14:56
yeah.
Kiona 14:56
how your life looks, and how you felt things would be different, but this is where you are now. And with it being just you and Macka together, you have time to process without needing to necessarily explain things before you yourself understand them.
Maddie 15:13
Yes, that was it. you know, apart from to our very close family and friends, we didn’t have to announce that we’d had the baby, obviously given she was premature, no one expected her to be here. So we really had a bubble of time where it was almost like no one even knew that she was here and that we were through this. And it was just a time for us to adapt to what was going to happen.
Kiona 15:37
Yeah. So how many weeks were you when you found out that you were diagnosed with preeclampsia?
Maddie 15:43
I was medication through my whole pregnancy because I was at high risk of preeclampsia due to family history of it. My sister had a baby nine months before Maya was born. She had preeclampsia. She had to relocate and have her baby in NICU. And so I was always kind of on high watch for that. I’ve developed hypertension quite early in pregnancy. At about 22 weeks, my blood pressure started to rise and I had to visit the hospital every day for CTG scans and blood pressure testing. They were able to kind of stabilize me with medications until about 32 weeks when it started to get quite high. they didn’t diagnose me officially with preeclampsia until three days before Maya was born. She was born at 35 weeks. So just before that, they officially diagnosed me with preeclampsia. And then my, when my blood pressure got too high for them to control and a real cause of concern for my safety, that’s when they decided to do a emergency delivery.
Kiona 16:55
Yeah. So Macka, when you realized that Maddie was at risk to develop preeclampsia, which could be a really, really scary diagnosis, what was going through your head? What were your concerns?
Macka 17:09
I didn’t
really understand what it meant and what was happening. I, I could see differences in Maddie when her blood pressure would go high and, and whatnot. when we went to the hospital this one time and Mads just started
spewing and, and yeah, it wasn’t very nice. And her blood pressure was, I think it was, well, like, 180, 190 or something.
Maddie 17:44
180 over 122.
Kiona 17:46
Ooh.
Macka 17:48
Like it was super high. then yeah, the nurses were, grabbed the wheelchair and were running through the hospital. And that was probably the first time that I kind of realized what was happening and that, maybe was really not okay, I guess. cause it’s quite hard. Like you can’t really see too much going on. Just see sort of like a tired or like flush kind and then obviously Mads will say like, yeah, something, I don’t feel quite right, but it’s hard to actually know and understand what’s going on without experiencing it or seeing a situation like that.
Kiona 18:34
Yeah. So when you realized, Macka, that Maya was coming sooner than expected, what was going through your head then? Were you happy that she was coming or were you concerned that she was coming early?
Macka 18:48
so Mads was admitted to hospital maybe seven days before. So she’d been staying at the hospital for seven days. I’d been staying a little bit as well, on like a couch. And the day that Maya came, they told us that Mads would be going home or back to Ronald McDonald that afternoon. So I actually just pulled off at the golf course and Mads rang me, they’ve just taken me for a scan so I can baby. Because she had no feeling. And so they just wanted to give her a scan she could see baby moving and what was going on and. they pretty much said, have you eaten today? Well, she had just had lunch. And they said, OK, well, you’ve got five hours and then the baby’s coming. So I got back in the car and drove back to the hospital and we sat and waited. Mads was quite nervous. was, I was, I’m sort of quite calm and just let things happen. I think if I stressed and that would make Maddie more stressed, that was kind of my mindset. So try just keep level-headed and calm and just let things play out. Obviously, we’re in the perfect place with people who are specialised in what they’re doing. And they’re probably some of the best people in the country, if not in the world, at doing what they do. So it felt reasonably safe, as safe as you can be, going into a situation like that.
Maddie 20:49
We also knew that although it was very scary for her to be arriving and knowing that she had to go into surgery and knowing that she was quite small, we didn’t have the background noise of worrying about, oh, do I know how to look after a baby? I have to take my baby home. Am I going to sleep through the night? Because we knew that she was going straight into NICU and she would be there for months. So we knew that although we are having a baby today, we have a long time to figure out what this looks like at home when we really do start our journey together. So although NICU is, you know, it’s a hard place to be, it teaches you so much about the basics of having a baby.
And it gives you time to adjust while being supervised. So I felt calm knowing that, like Macka said, we were in the best place that we could be for Maya.
Kiona 21:46
yeah, I could totally see both of those things. Macka, you were talking about just kind of holding very little stress, because if you were outwardly stressed, it could be easier for Maddie to be stressed. And the having the comfort and kind of that silver lining of the thought of when you go into the NICU, you know that you’re not figuring everything out by yourself. There are people that guiding you and supporting you being able to care for Maya as she comes out as this tiny little babe. Just waiting to, go into your arms. And so that actually brings me to say that in your guest request form, you guys said that Maya had to go through some surgeries right after birth. What was that like?
Maddie 22:31
It was scary.
Maya was born through emergency C-section. They offered to induce me or to give me a C-section, and I opted for a C-section. Obviously, I had Macka by my side, holding my hand, and I was very scared. I don’t like needles. I don’t like medical things. So it was a lot for me to take on, and Macka was with me when they took Maya out. However, before I could hold her or even really see her, she was taken away straight away. And so Macka went with her, and he said, “Should I stay or should I go?” And I said, “Go with her.” So then it was just me in the room. We 19 doctors and nurses in the room with us and assist and things. And so a midwife that I’d never met because my midwife was Dunedin. my baby and my husband were gone and it was just me. And they said, you know, Maya’s going to need to go on to surgery. We’re just going to figure out if it needs to be right now or if we can wait till the morning because my C-section was at night time. They were happy with how she was breathing on her own when she came out. She was responding to the medication they were giving her. So they were happy to wait till the morning time to give her her surgery. So that night, that 12 hours that we were kind of waiting was probably the longest 12 hours of my life. Just not knowing I had, I’d never had surgery myself, let my baby going in for it. Macka had never had surgery. It was just a lot of unknown. And when you see the size of Maya and you think, how on earth are they going to, you know, get inside her bowel and do things to this tiny little, what I would call a piece of string. So it was a very scary and unknown feeling for me. and like Macka said, he was so calm. I’m an anxious person anyway. And so my anxiety was really heightened and Macka just kept us both calm and reassured us that we were in the right place with the right people. And the doctors and surgeons were amazing at keeping us informed of what was going on and answering any questions we had. So it was really scary, but we were well looked after.
Kiona 25:01
Yeah. And Macka, when you had to leave Maddie in the OR to go with Maya, what was going through your mind? Were you kind of just going with the flow of what the doctors were doing or were you able to hold her? Like, how was that?
Macka 25:17
when Maya came out, they checked her breathing straight away
in the operating room. They. then put her into an incubator
and took her away. yeah, I was kind of quite torn because either sit with Maddie kind of be there for her or potentially just let our baby go off with people
we don’t know. Obviously, we trust them in that, but, like, we didn’t know what was going to happen. Like, they could have taken her away and we could have never seen her again. she could have not have made it kind of thing. So yeah, I think going with Maya
was probably the right choice. And yeah, we just went up to NICU. They have eight rooms in Christchurch. every room is different intensity. So she was in the highest intensity room. They had her wee spot there waiting for her and took her up there. They switched switched over incubators to one that was sort of more fixed to the checked her breathing, obviously monitored her breathing and stuff again got the incubator to, right temperatures and all that jazz. So I was probably up there for
an hour and then back down. Mads was out of surgery and just in a sort of recovery room. And the ice block when I came back. So
Maddie 26:51
had my mum with me. So although Macka was, I didn’t have my mum with me in the operating room. She was outside. She had driven from Timaru, which is two hours away from where we were when we found out we were having Maya that day. So when I came out of surgery and Macka was in the NICU with Maya, my mum was allowed to sit with me in the recovery room. So I was never alone in the process. I always had, you know, some sort of family support there and by three hours later, my dad had arrived and both Macka’s mum and dad had arrived as well. So turned into a bit of a party in the recovery room a couple of hours on.
Kiona 27:33
Yeah. It was a birthday party.
Maddie 27:34
Yeah. Exactly. Exactly. Yeah. I guess it’s for us. I’d never had another child. So we didn’t really understand what we were missing out on in terms of know, holding your baby and spending the first, well, weeks, let alone just, you know, a couple of hours with them, even in the room with you. So I didn’t feel like we were hard done by
because I’d never experienced anything else. And in my head, she was just being taken to where she needed to be to be looked after. I can hold off a few months of not being able to, you know, really hold her and have her in my room and things for the long term of her being healthy and safe.
Kiona 28:17
Right. So how old was she when you got to hold her and try to feed her and things like that? And then what was your feeding plan? Did you plan on breastfeeding? Were you pumping and giving her milk in the NICU? Like, how was that?
Maddie 28:33
We were able to visit her in the first few days and look at her in her wee incubator. It had wee holes where we could put our hands in. We were allowed to touch her. She was probably about, oh, she was a few days old and we were allowed to hold her, but she was connected to lots of wires. And she was intubated. So she had a breathing tube through her mouth and her throat. And so when holding her, you’ll see in the pictures, we’re kind of holding this mattress with the baby on it with a whole lot of wires and things. So it was quite, you know, confronting and quite difficult to try and snuggle in with your baby with all of this going on. It wasn’t probably until about maybe three-ish weeks that she was a bit more free to move and we could get her out ourself and hold on to her for hours and things like that. She was fed through a nasal gastric tube for a long time. And in fact, she was no by mouth for a really long time because of her surgery impacting her bowel. They put a stoma in during the surgery. So it was a very, you know, cautious journey into introducing food to her. So I was keen to breastfeed. I had been the whole way collected colostrum leading up to it. And I’d started the breastfeeding journey when she was a couple of weeks old with the help of some lactation consultants in the hospital. And she was a good feeder. She did really kind of latch and sometimes it would take a while, but when she was on, she was good. It just ended up that because of all the medication she required, it was easier for us to put that medication into a bottle. She wasn’t taking the medication through a syringe. She was spitting it out. Then the doctors suggested we introduce a high calorie formula because of her limited growth. And so at that point we were giving half formula and then half breastfeeding. It was all, it was very messy and I had to kind of let go of the fact that I wanted to breastfeed because it wasn’t actually working for Maya. And so that was quite hard because I had thought, you know, well you hear so much about breastfeeding really bringing the connection between you and the baby and having so many benefits. But in our situation it actually just wasn’t going to work. while we were still in the NICU, she might have been about six or seven weeks old, transitioned to full bottle fed formula and putting all her meds in the bottle. And things actually started to go a bit smoother from there. was spilling less, she was just kind of a little, she was a happier baby because she wasn’t having try and take nine different medications through a syringe that do not taste very nice. So breastfeeding journey was also a roller coaster, but I’m glad I got to give it a try. And, you know, if we have more children in the future, I would, I’ll definitely try again. But for Maya, the best thing was to be bottle fed her formula that’s going to help her grow.
Kiona 31:56
And Macka, as you’re watching Maddie go through all of this to try and feed Maya, what’s going through your head? Are you sad, supportive? Like what’s happening?
Macka 32:09
Yeah. So like Mads said, Maya was pretty good at feeding at the start. It just was, we couldn’t control it. enough of how much she was getting and at what times to the medications that she was having to take. So it was just, she was like fluctuating in weight gain or weight loss.
So I found it quite entertaining watching the breastfeeding, to be honest.
But yeah, I thought it pretty amazing how a little baby can work out how to get milk out of something, I guess.
Kiona 33:02
Yeah.
Maddie 33:03
She actually tried to breastfeed off Mecca before me.
Macka 33:07
Yeah. So she was having a go at my nipple first.
Maddie 33:13
Because
Macka 33:13
Yeah.
Maddie 33:13
we were doing lots of… of skin to skin in NICU so that the baby can, you know, understand the difference between who’s the nurses and who’s the And she just started going for it. She was on Macka’s chest and she just found the nipple and tried to grab it. And we thought, okay, she’s ready to breastfeed. It was very funny.
Kiona 33:33
I imagine there was lots of giggling at that time.
Maddie 33:36
Yeah, definitely. And you hold on to those moments because it’s not a giggly kind of place. So when you can find some humor and some joy in what’s going on, then you really hold on to it.
Kiona 33:49
So that actually brings me to the question. She was born 35 weeks and 5 days. How much did she weigh when she was born?
Maddie 33:58
She weighed 5.2 pounds when she was born. However, because she had a perforated bowel in utero, she had 400 mils of meconium inside her stomach. So, I don’t know, you imagine more than a Coke can of meconium that caused her stomach to expand. So, she was very distended and very full of meconium. After her surgery, when they drained all of that out and took out the perforation in her bowel and put her stoma in, her working weight was 4.6 pounds.
So, small, but for the gestation she was, it could have been worse. She could have been smaller. She was growing well inside of She just had the issue of the bowel perforation, which caused her lose weight after her surgery.
Kiona 34:58
So, let’s talk a little bit, actually, about what cycstic fibrosis is. tell us what you found out about it and what it actually means to be diagnosed with cystic fibrosis.
Maddie 35:12
Okay. So, it was a bit of a weird situation. I, like I mentioned earlier, I’m a very anxious person. I was about 25 weeks pregnant and I called my mum crying and I said, there’s something wrong with my baby.
I had Anterior placenta. So, I didn’t feel any baby movements.
My mum reassured me that, you know, it’s first time mum jitters.
Which completely makes sense. I called my midwife and I said the same thing. I think there’s something wrong with my baby. She said, there’s nothing in your 20-week scan to suggest there could be anything wrong. I don’t know how it works in America, but we have to pay for our scans. And I said, well, can I just, can I just get another scan, you know, to give me peace of mind, to soothe my anxiety. Because obviously me having heightened anxiety isn’t good for the pregnancy and for the baby. So, they agreed to give me another scan. At this point, Macka had just a career in playing professional rugby here. So, he was actually away with his rugby team. He was in Christchurch where we ended up. And I was down in Dunedin and I went to the scan on my own. I went to the scan as reassurance that everything is okay. I went by myself thinking, I just need peace of mind because I don’t feel right. In the scan, it took much longer than the other two scans and they said nothing to me. They’re not allowed to say anything to me. All they said was, you need to call your midwife. You need to get to the hospital. I was just distraught. I driving to the hospital in tears, calling Macka, calling my family. None of our family live where we are. We’re two and a half hours away from any family. I was calling my mum to come down. My midwife at the hospital and she said there’s a perforation in your baby’s bowel. At that point we were told two different conditions that it could be. Neither of those was cystic fibrosis.
And we started to learn about Hirschsprung’s disease and things. Which, you know, we were told it could be this. In that case you have a surgery and it’s fixed. So although we were scared, we knew that they knew what to do to fix the baby.
then when we were referred to fetal medicine, which is a specialist in Christchurch for some tests, the doctor said to us, is there a history of cystic fibrosis in your family? And we said, what is cystic fibrosis? We’ve never heard this word. No, no one in our family has ever had this. And she said, I’m just going to get your bloods done to rule out cystic fibrosis. Please don’t Google what it is in the meantime. Well, the next day our bloods came back as we were both carriers for cystic fibrosis, giving our baby a 98% chance that that was the issue. So there’s 57,000 babies approximately born in New Zealand each year. 10 of those approximately have cystic fibrosis.
15% of people with cystic fibrosis require an ileostomy, which is what happened to Maya. So she is really niche.
That what happened to her they don’t see very often at in New Zealand and in the NICUs. So it was very scary because it was an unknown for a lot of people. We were in the right places. They did have a cystic fibrosis specialist there. And we were able to learn about what it is and how it impacts our life. Pretty much it is genetic condition the baby picks up two faulty genes. And it impacts the and the digestive system and the pancreas and the liver. So it impacts quite a lot of the organs. The main one being the lungs.
It deteriorates the lungs as they grow. There’s sticky mucus in their lungs that lungs deteriorates them. And then they struggle absorb nutrition so they can become malnourished. And they have to take pancreatic enzymes in order to try and absorb their food. There’s different medications around these days funded later in life to help with cystic fibrosis. It’s called Trikafta. I think it’s funded in America two years old. It’s funded in New Zealand from when they’re six years old. And that can slow down the deterioration of the lungs. When we first googled cystic fibrosis, the line that comes up is life-threatening condition. That was a moment I’ll never forget reading that. I waited till Macka got home and we read it together.
And when you read down it says, you know, life expectancy 10 years ago was 19 years old. The life expectancy now is looking more like into the 40s. But then I’m overwhelmed with thinking, well, my baby’s never going to get to have her own family. And all of these things are going on in my head. and struggled to grasp the facts of cystic fibrosis because all of it just feels jargon that’s negative. Like I really struggled to understand the condition and how, sorry,
and struggle to understand why it happened to us.
Why we have to go through something like this. And not that I would wish it upon anyone else, but you just never expect your journey to go like this when you find out you’re So finding out the diagnosis and learning about the diagnosis was the hardest few weeks of our life. And especially when Maya wasn’t born yet, when she was born, everything was okay because she was here and we could protect her. And, you know, everything is worth it because she’s here. But at this point we don’t even know if she’s going to survive. So it was traumatizing, I guess, to say the least.
Kiona 41:28
Mm-hmm. Sorry. No, that’s okay. Yeah.
So Macka, how did you feel when you were reading up on what cystic fibrosis was? What was going through your mind?
Macka 41:47
Um,
I guess
I can read all bad stuff. Yeah, so you can read all the bad stuff that is out there and you can either… Only listen to
or you can dig a bit deeper and see that there multiple, multiple, very, very successful either in sports or business, that have cystic fibrosis. So I think for was sort of same as the like staying calm and being level-headed was, well, if she’s only got 20 years to live, she’s going to like smash those 20 years. Like she’s going to the most
person in whatever she does. She’s going to like achieve more than anyone has, like she’ll just make the most of her as such. So I was kind of just trying to remind Maddie that, yes, it’s not great. It’s not ideal, but it is what you make of it. And
know, she doesn’t get to live as long as everyone else, then she’s going to have a like a bloody good time doing it no matter what she does. that’s how I sort of looked at everything and left the bad stuff out and you can only do what you can do. So make the most of what you’ve got, I guess.
Kiona 43:31
Do you both think that Maya being born with cystic fibrosis led you all to parent in a way that values every single Here, this is why I’m asking this question. As everybody has children, nobody expects to live longer than their children. Right. And so both of you are aware that it’s possible that you will with Maya. How do you think that changes your mindset of parenting versus what you would think someone else who has a baby that doesn’t have cystic fibrosis would parent? Does that make sense?
Maddie 44:13
It does make sense and it’s something that I’ve thought about a lot.
can’t change anything. It is what it is. But I want give Maya every opportunity to do what she wants and succeed in what she enjoys and celebrate every milestone. So something might seem minor to some people, but I want to surround her with the people who love her and celebrate because we don’t know how many celebrations she’s going to get. So I think it does really give you that whole every day is a blessing kind of feeling and just giving when she gets older and starts to be interested in things and have hobbies and that, just supporting her 100% and guiding her to do the best she can and everything she wants to do so that she can live her life to the fullest, really.
Kiona 45:10
Yeah. I think that, and I’m sure many listeners as they listen to this will think this as well, you guys are strong as fuck.
to be able to, truth is, you don’t really have a choice to do otherwise.
Maddie 45:30
Correct.
Kiona 45:30
you don’t have a choice to be weak. You don’t have a choice to say, no, I’d rather And you guys are doing it, right? And you guys are doing it as a team. You guys are communicating with each other. You guys are on the same page from what it sounds like about how you guys are going to live your life, raising your daughter, Maya,
Maddie 45:50
Yeah.
Kiona 45:50
and providing the best for her. She’s going rock her life. You know, she’s going to be, have access to all the opportunities and all of the things. And that is absolutely beautiful.
Maddie 46:00
Oh, absolutely. And I like to think that Maya was given to us because we can handle it and we can give her the best support and love that she needs. Macka and I obviously both carry this gene and it’s not like, well, I speak to myself, but it’s not like I would choose to be with someone else to not have a baby with cystic fibrosis, you know, like love conquers all right. Like I, Macka and I are such a good team together. And, you know, if we do want to have more kids, we are able to go down the IVF journey so that, you know, we don’t have another child with cystic fibrosis. But with the one we’ve got, we just work as a team to give her the best life that she can. Try and not think about, you know, the negatives and what can happen in the future. Things will get harder as she gets older and starts to ask more questions and doesn’t understand why she’s different to other kids and she’s in the hospital all the time and she takes all these medications and then when she gets older again and she is falling in love and she needs to be a bit more cautious about who she’s around and what genes they carry and getting them blood tests before they go on dates or whatever.
Kiona 47:11
So
Maddie 47:12
as she grows, we’ll face new challenges and we’ll face new conversations but as long as Macka and I just, you know, communicate with each other and we just seem to be on the same page about how we approach these things as they pop up.
Kiona 47:28
I think that’s beautiful and let’s take a step back a little bit and talk more about what postpartum looked like for you guys because you guys are going through all of this. Like you said, you were in the hospital for a long time so you had less worry about that trying to figure out how to parent a baby.
What was going through both of your minds psychologically in that process? Do you think either of you experienced any kind of postpartum depression or anxiety or do you feel like you were well supported?
Maddie 48:00
We all have very different answers on this because we were completely different people. I I needed Macka around because he, well he can speak to what it was like for him but he was very calm and very supportive.
I was admitted for 10 days after giving birth and then obviously back to Ronald McDonald House and I came off all social media, deleted all my platforms and really isolated myself. I didn’t tell my friends that she was born. I just really sunk into, I guess, a pit of postpartum depression. I
was anxious and I was nervous and I was every day struggling with the realisation that this is our life and why did this happen to us and a lot of things now that I wish I could have put to the side and focused on the positives but at the time I couldn’t. I was too overwhelmed and it was a lot for Macka to deal with. I was crying myself to sleep every night. I was probably quite miserable to be around. We went to therapy. NICU provided us with a social worker, with a psychiatrist. So we did all of that and they ended up medicating me for postpartum depression which I saw and people around me saw a change you know, my outlook on life and, you know, just my day-to-day activities really. I easier to manage after medicated which, you know, I have no problem with. I was happy to do whatever it would take so that I could focus on supporting my baby as opposed to kind of drowning in my own feelings.
Kiona 49:45
Macka, what about you?
Macka 49:47
I was trying to, like, remind her yes, this tough and not ideal, it’s a very special moment that you’re never, ever going to get again. You’re never, ever going to a first child again. So you have to look at it as this is a very special time, special moment. And, yeah, making the most of of every day and every little, like, look. or… little grin or yeah she just squeezes your finger oh yeah i was was okay i don’t know maybe it hasn’t hit yet but yeah for the most part i’ve been pretty sweet and yeah just trying to maddie’s head a bit more clearer and a bit more on like a positive pathway rather than focusing on anything negative that’s going on
Kiona 50:57
yeah so i think that what i’m hearing between both of you you guys are a very good pair you guys are very balanced
Maddie 51:05
yeah
Kiona 51:06
and that is so awesome because and i’m not saying maddie oh my god you have so much going through your head all the time and you’re full of anxiety blah blah blah like it’s just like being able to even hear the tones of your voices and how you guys are so um balanced like i i just think that it’s really awesome
Maddie 51:26
we actually hear that often as i mentioned earlier Macka and i both work as personal trainers in a group fitness setting and when we coach together people always say that we’re such a good balance of coaches because i’m so high energy and loud and kind of you know excitable and mac is very calm and focused on one-on-one technique and things and they just think that we first of all they can’t believe that we’re married but second of all they think that we balance each other really well so i think in all aspects of life we really do and i feel really lucky to have had someone like that through this experience because if if i was doing this with someone who was the same as me i’m not quite sure how we’d be feeling not quite sure we’d be calm yet
Kiona 52:15
yeah so tell me again remind me again how old maya is right now
Maddie 52:22
maya is she will be six months next week
Kiona 52:27
six months
Maddie 52:28
yeah
Kiona 52:28
oh my goodness all of this so fresh for you guys
Maddie 52:33
is technically six she’s yeah gestationally she’s always a month so developmentally she’ll be five months but actual age she’ll be six months
Kiona 52:44
i think that it’s amazing that you’re sharing your story right now because you you guys are still in the thick of this
Maddie 52:50
right
Kiona 52:51
you guys are still in the thick of this process the thick of processing and you have so much to look forward to still right so much more that’s going to happen and so much more to process through and i am just so thankful that you guys are sharing your your story with everybody right
Maddie 53:12
yeah we went through a bit of a flip like i mentioned i shut down all my social media i kind of shut out communication with friends and things and then when we brought maya home and we started to live our journey as medical parents i decided that i wanted to be an advocate for uh increasing people’s awareness and knowledge around cystic fibrosis that’s when i started reaching out to local news agencies to podcasts and things because the more that cystic fibrosis is talked about the more likely that one day a cure will be found and look that might not be in maya’s lifetime but it’ll be in someone’s lifetime so i feel lucky to be able to talk about our journey and although it’s not always easy to talk about it’s just you know any conversation of our cystic fibrosis is moving in the right direction and i also want other parents that have children diagnosed with any sort of condition to not feel like they’re alone and just to know that although in the thick of it it can get pretty dark each day you come to terms with it more and things get easier so yeah we feel
Kiona 54:22
yeah
Maddie 54:22
lucky to be able to share our story so thank you for giving us that platform
Kiona 54:27
yeah of course absolutely absolutely now i think the best way to close off this interview is i have three final closing questions for both of you um so it’s the same question just asked slightly differently because of the perspective right so um maddie
maddie if you could give advice to any pregnant person on how to best prepare for pregnancy labor and birth what would that advice be
Maddie 54:55
my advice would be to trust your instincts i think maternal instinct hits
even as soon as you decide you want to become a mother you know your body you know your baby when you when you become pregnant and i think just to trust in what you’re feeling and to ask any questions and raise any concern. Because, you know, if I hadn’t pushed for that extra scan, we would be in a very different scenario. We would not have been where we needed to be when Maya was born. And I would hate to think what the outcome of that would have been not having the surgeons and things around. So I think, trust your instinct. And if you have a complicated pregnancy and if you have a tough pregnancy, hold on to those times of joy and those times of, oh, actually, I felt okay then. I wore a pretty dress. My bump looked great. Just hold on to those good times, even if they are scarce.
Kiona 55:57
Yes, I love that. Now, Macka, what advice would you give to all partners as they support their spouse or loved one throughout pregnancy, labor, and birth?
Macka 56:10
I think if they ask for something, food or something, just go get it.
if you have, unfortunately, have complications or whatever, uh, I think what worked really well for us when we were talking to nurses, doctors, midwives, surgeons, whoever, is have one person, uh, we’ve got one person. I just listened the whole time. took in, sort of, all the information, and Mads gets weird flustered in that, and just fires questions. It comes out of the meeting and, has no idea what’s gone on. So having one person, sort of, ask a lot of stuff, and then one person just sitting and listening, that you can talk about it afterwards, what actually, um, transpired through that time. and then I guess, at birth and just reminding, uh, your partner, like, how good they’re doing, and, just positive, words of support, and, that they’re doing, doing great. Obviously, the, the partner can’t do anything to help apart from that, so, um, and they’re just staying close afterwards, and, yeah, appreciating all the little stuff.
Maddie 57:33
Manko supported me a lot during the, when they were taking Maya out, because I just randomly started singing the Vinga Boys, and instead of him being like, what are you doing? He just started singing with me, so the surgeons and the doctors are all doing their own thing, and we were just sitting there, forehead to forehead, singing the Vinga Boys.
Kiona 57:55
Oh, I love
Maddie 57:56
though.
Kiona 57:56
that,
Maddie 57:56
Yeah.
Kiona 57:57
think that’s
Maddie 57:57
I
Kiona 57:57
great.
Oh, yes. And that’s, that just proves that, like, when you’re a team, you’re a team.
Maddie 58:04
Yeah.
Kiona 58:05
Right?
Maddie 58:05
Yeah.
Kiona 58:06
Like, you just, you just do it, and, because you know that that’s what’s needed at that point in time. It doesn’t matter what everybody around you thinks, it’s what you need at that time, and that’s what you go for.
Maddie 58:17
Yeah.
Kiona 58:18
Yeah, I love that. my next question is, if you, Maddie, had one resource that you would share with the listeners, what would you choose?
Maddie 58:29
a resource that I found really helpful, um, during my pregnancy was the pregnancy app grow. I found it really comforting. It would give me information about what I could be feeling that day, maybe I was, maybe I wasn’t. it, it would explain the size of the baby, what the baby should be doing at that time. It just felt like I had kind of like a little midwife in my I asked my midwife a lot of questions, but I didn’t want to, if I had it my way, I would be asking questions all day, every day because you know, you don’t, you have never, I’d never been pregnant before. It’s all new to me. I couldn’t feel the baby because of the placenta. I had so many questions. So it just felt good to be able to a app that could, you know, give me very brief answers explanations. So I really enjoyed that. And in terms of, if you do have a baby with a condition, I think it’s, reaching out to the organization is really helpful and and I’d be pretty certain that most conditions will have an organization so here in New Zealand it’s called Cystic Fibrosis New Zealand and when we reached out to them to let them know that you know we were pregnant with a baby that was most likely going to be diagnosed with cystic fibrosis we received the most amazing support we had someone from the organization come and meet with us in the hospital they brought a big care pack they brought us pamphlets they brought us information they included us in all of their newsletters they have continuous check-ins with us now obviously because Cystic Fibrosis is quite rare they’re able to have that one-on-one contact with people but just the information they provided us with was invaluable and I think you know if if you are in a situation where your does have some sort of condition find your group support and find where the information is going to be the most accurate and really you know use those people because I’ve found them very supportive
Kiona 1:00:33
yeah I think both of those are really awesome resources
now Macka same to you if you had one resources that you would want to share with the listeners what would you share
Macka 1:00:46
I would say I don’t know if it’s a resource but if you have like friends or family get in around their babies if you can just learning how to like hold properly and doing it with uh doing it with like a child that’s a little bit stronger than um baby seems like kind of got a little bit more flexibility there
Kiona 1:01:13
um
Macka 1:01:14
um you don’t have to be as careful yeah I’m not sure if you’re cool or a resource but that kind of helped me just um never really holding a baby or anything before and having a couple of like friends and family have young just getting some like hands-on time
Maddie 1:01:33
trial run
Macka 1:01:33
for yeah before your baby comes
Kiona 1:01:37
yeah I think that’s actually great and I would say is a resource it doesn’t have to be necessarily like an organization or company families are very resourceful right like to talk to you about information that they’ve experienced or shared and to you know get that hands-on experience with those practice babies and drop them you know it’s okay
Maddie 1:01:58
you could yeah yes not us you can see it with our friends though the the change and how they would hold maya and and look after maya you know three months ago compared to now is crazy and I just know that when they have their own kids they’re going to feel so much more comfortable because they’ve babysat for us and they’ve you know changed naffies and things so we are probably the trial run for a lot of our friends
Kiona 1:02:22
yep yep which I think is great and it’s amazing that you have a lot of friends that you can trust and lean on for support and love and it’s you know chosen family which is beautiful
Maddie 1:02:33
yeah we are really lucky in that sense
Kiona 1:02:36
yes yes so my final question for both of you is what is one word that both of you would use to describe the pregnancy and birth experience with maya miracle
Macka 1:02:53
i think one word to describe would be extraordinary
Maddie 1:03:02
yeah
Kiona 1:03:03
yeah or i think those two words will be definitely heard by the listeners as they hear your story yeah they will know that you guys have been through a lot and are still going through a lot and that you guys are just taking it one day at a time
Maddie 1:03:17
we are that we are yeah
Kiona 1:03:21
well thank you Macka and Maddie for coming on the birth as we know it podcast i’m so honored that you guys were able to share your story with us and i already know for a fact that my listeners will absolutely learn something from your story no
Maddie 1:03:34
thank you so much for having
Macka 1:03:36
me yeah thank you been our pleasure
Kiona 1:03:39
yes absolutely absolutely
Outro 1:03:52
If you’ve made it this far, the first thing I want to say is thank you. Thank you for giving Maddie and Macka as well as Maya your attention and energy because the story that they shared today is very informational and can truly make a difference when you learn something new. I know that during this recording I learned so many new things about cystic fibrosis. So Maddie and Macka, I want to give you a huge thank you for sharing your birth story with Maya and for giving everybody a little bit more information they can dive a little bit deeper as well as bringing awareness to cystic fibrosis. And for you listeners, if you want to see the video
of them finding out about them being pregnant with Maya, as well as seeing the show notes for this episode, you can go to birthasweknowatpodcast.com /84. Now during this episode, Maddie did talk about how she struggled with postpartum depression and needed to get a little bit of extra support with that. And so if you’re intrigued in hearing another episode where someone talks about their struggle with postpartum depression and how they helped resolve that issue, tune into episode 38 with Athena Estelle where she talks about the birth of her daughter as well as her journey through postpartum depression. And before I let you go, I want to give all of you a reminder that I am offering birth and postpartum doula services in the greater Seattle area. So if you want to learn more about those services, you can go to birthasweknowatpodcast.com/doula. All right, friends, thank you so much for sticking around. And I look forward to talking with you again soon. Bye for now.
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