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Noah's Story
121 Plays1 year ago
Melanie is a health coach, personal trainer, yoga teacher and wife to the best husband, Pieter. They just moved to the US (Cape Cod) after living (and giving birth) in Switzerland.
Melanie’s pregnancy complications started during a routine 20 week ultrasound where they noticed some abnormal findings. After sending them for further genetic testing, her son was diagnosed with a rare mutation of Noonan Syndrome. Originally, doctors told her of another family whose child had the same mutation and was thriving, so they expected Noah to have a good outcome. Unfortunately as her pregnancy progressed, she had to be hospitalized for one month prior to her son’s birth at 31 weeks, where he passed away after a short stay in the NICU.
After the loss of their son Noah, she decided to specialize in prenatal and postpartum fitness. After the recovery from a C-section, she made it her new mission to help other angel and rainbow mothers in their journey towards physical, mental and emotional healing.
Melanie practices out of the Center for the Spiritual Journey in Cape Cod, MA. https://csjcapecod.org/
She also has an instagram account where you can connect with her at MelsLifeLab:
https://www.instagram.com/melslifelab/
If you want to share your love to Mel and her husband, or perhaps want to share your own story of loss and healing, email us at storyteller@theblindsided.com
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Transcript
Introduction to Podcast and Hosts
00:00:00
Speaker
Hi, I'm Nicole and I'm Desiree. We are both mothers who run a support group for perinatal loss. Through our group, we have met many wonderful families and have had the honor of hearing about and sometimes meeting their beautiful babies. We noticed that families feel relief when they can share openly and feel seen when they meet others who are telling similar stories. So we created this podcast as a space for families to share the stories of their babies.
00:00:23
Speaker
We want to honor and remember these children. We want to help you navigate your life after loss. And most importantly, we want each story to give you hope. So please join us as we share these stories of grief and love. Welcome to The Blindsided Podcast. Hi, everyone. Welcome to The Blindsided Podcast. We're your hosts, Nicole and Desiree. Hi.
Melanie's Introduction and Background
00:00:48
Speaker
Today we are here with Melanie. Melanie is a lost mom from Cape Cod, well living in Cape Cod, Massachusetts right now, who has turned her pain into purpose. She's going to share the story of her son Noah with us today. Welcome, Melanie. Welcome. Thank you for having me. Melanie, can you tell our listeners a little bit about yourself? Hi, my name is Melanie. I'm 39. I just moved to the US from Switzerland. My husband and I are like,
00:01:17
Speaker
multi-background international wanderers. That's pretty cool. Yeah, we chose the US just for a fresh start. We're ocean people and so we thought Cape Cod was a good place to land and see where we end up.
00:01:41
Speaker
Yeah, in the midst of moving here, we found out I was pregnant and we were kind of back and forth between Europe and the US at the beginning of my pregnancy. And then when things got complicated, we stayed in Europe until the end of the pregnancy. And now we're back here since March, I guess.
00:02:03
Speaker
see what happens next. Yeah, well, welcome back to the US. We're glad you're here. We're glad you found us. Can you tell us about your pregnancy journey with Noah?
Conception and Early Pregnancy Challenges
00:02:14
Speaker
Yeah, we were in Thailand when we conceived and it was just such a... As I said, we were kind of in the process of figuring out where to live and we said
00:02:25
Speaker
you know what, we're just going to start trying. I was 38 at the time and I thought, okay, it's going to take a while. I'm 38. I'm not 28. And then it was so funny that just like first try, I was pregnant and I was kind of like not ready for that to be the case, but we were so happy. I felt so proud of my body to be able to like just do it at that age. And yeah, it's amazing. And we were so excited and
00:02:52
Speaker
everything was kind of up in the air with our lives at the time so that was just like this one thing of like hope also we had had a lot of deaths in the family right before and and it was just like it was like this gift just like a new life coming into into our family the pregnancy
00:03:12
Speaker
itself, I hated it. It was just not an easy pregnancy. And I remember telling some of my friends, I think people, women lie about pregnancy being wonderful. I just don't know how, it was awful. I had all the, like my first trimester was extended into the second and I was sick all the time. Morning sickness? Yeah, it was all day sickness.
00:03:37
Speaker
And I kept waiting for that second trimester glow and bliss and it barely came. And then obviously like when I, when I finally start to feel better in my body and I was kind of starting to get a sense of being comfortable in the pregnancy or as comfortable as I could be, we find out at 20 weeks that my son had a, had something.
Diagnosis of Noonan Syndrome
00:04:02
Speaker
But everything was so vague at the time and the doctors were not very forthcoming. It was just very uncomfortable and just like not the best healthcare experience at the time. We were in Switzerland at the time and the good thing there at least is that things were quick so we could get genetic testing right away and
00:04:23
Speaker
So in four weeks, we had the results. And so at 24 weeks, we knew that he had Noonan syndrome. And we're like, what is Noonan syndrome? I had never heard of Noonan syndrome before this. And we're trying to find everything out about this syndrome and joining Facebook groups and everything. And it was just like, OK, it might be really, really bad or it might be OK.
00:04:49
Speaker
So what is it? The information was so vague and not enough and all over the place. And so we were able to get a meeting with the geneticists.
00:05:00
Speaker
And we were almost ready to terminate at that stage because we were not sure what was going on. And the doctors kept throwing that word so loosely without actually sitting down with us to talk with us. So we're like, are they hinting that we should terminate without telling us that that's what we should do or like what is going on? So we're making ourselves ready to terminate, even though I really didn't want to.
00:05:26
Speaker
And then the geneticist told us, no, his specific mutation is mild. There's only one other case of a girl who has his exact mutation and she's five and thriving and had some early challenges, but she's doing fine. And we're like, okay.
00:05:45
Speaker
It's crazy that they knew that. They knew specifically that one person that had it. We found a research paper later on. My husband, he was doing a master's at the time, so through his university links, he could access academic papers. Then he found the same paper and there was just this one case with that specific mutation.
00:06:07
Speaker
But still, I mean, it's funny because statistics, I mean, you can stretch it and manipulate it to look whatever you want it to look in.
00:06:16
Speaker
And yeah, when there's only one case, then you can say, yeah, a hundred percent chance it's going to be mild, but it's just one case of that specific mutation. So we were getting ready to welcome him and we were kind of grieving a healthy baby and making ourselves ready to welcome an unhealthy baby and see what the, and trying to learn what that would mean and, and figure out what that could look like. And.
00:06:41
Speaker
just kind of doing the research on that and i thought i'm a health coach or i study to be a health coach and then the pregnancy came and i couldn't work but i thought okay everything that i've been learning about health and wellness and all these things maybe maybe that's how i help my son you know and with his challenges so yeah getting on board with this whole
00:07:04
Speaker
motherhood, this different kind of motherhood thing. So death at that point was no longer even part of like the equation or the prognosis. So it just came as a
Pregnancy Complications and Hospitalization
00:07:17
Speaker
shock. But I guess like a week after we found out that he had what he had, I started to have early contractions because due to the disorder, it's very common to develop extra amniotic fluid. So it was very big and very swollen and
00:07:33
Speaker
So I had to be hospitalized for a week and then I got discharged when everything got stable. Ironically, I got sick at the hospital with pneumonia and so I had to be brought back into the hospital because the coffee made the contractions come back and it was very uncomfortable. So I lived for like a month and a half, the last month and a half in the hospital until
00:07:58
Speaker
after a lot of back and forth and just being on bed rest for a month and a half, the doctors, somehow, one day to the next, things changed. They decided that he had to come out, that he was no longer safe in my womb. I don't know, I guess it's weird talking about it a year.
00:08:19
Speaker
almost, it's a little over a year since it happened and kind of trying to... Sorry, how many weeks were you when they decided that they wanted to, I don't know if you did a C-section or induce you, but when they decided to deliver your son, how many weeks were you?
00:08:33
Speaker
I was 31 weeks. 31 weeks in one day. At 31 weeks, they had to drain a meiotic fluid. I thought at that stage, okay, this is good. I finally feel a little bit better in my body. It was the next morning that I sensed that he was not moving normally because he was very active. They monitor me all day at 31 weeks in one day. It was the longest day.
00:09:02
Speaker
It's one moment, the doctor said that I was going back to my room and then an hour later another doctor came and she said that they were afraid that if I went into labor in the middle of the night, given his condition, that they wouldn't have the full team. So it was just their
C-section and Medical Decisions
00:09:21
Speaker
decision that I was having a C-section. So I had a C-section, even though I wanted
00:09:27
Speaker
natural labor but I kept thinking okay whatever's best for for Noah I'm on board you know even though the whole process I was just not very happy with how doctors handle my case I felt always like they were talking around me instead of to me
00:09:44
Speaker
But yeah, I can't I guess I went along with it and and in hindsight it was the only way but at the time I felt very Bulldozed by by the decision to have a c-section. Yeah, it's hard because you look back and then you say like oh man I wish I would have
00:10:01
Speaker
Everything that you're saying, you just wish that you could have brought it up then, but you thought of it obviously now, but the decision that you made at the time was the right decision or the best decision for you. Cause that's the only knowledge that you had. You didn't have, you only had what they told you. Yeah. You had a C-section. Was your husband, how did that work out? Was he with you at the hospital? Did you call him? Was it an emergency? No, he was with me. He was with me the whole, like the moment we knew that he was happening, he came.
00:10:27
Speaker
And he was with me in the delivery room, but neither he was with me on my side of the screen. So he couldn't see Noah. The moment he was born, he was taken away to just do damage control because he couldn't breathe on his own. And we couldn't see him for like two or three hours. The original plan was that he was going to come out and my husband was going to be with Noah.
00:10:53
Speaker
The situation was so, so much more severe than anticipated that they had to take him away. And my husband stayed with me and we didn't know anything for like two hours. Oh my goodness. Yeah. So yeah, you're opened up and then, and then your son is somewhere else and you don't even hear him or know what's going on.
00:11:13
Speaker
Yeah, it was very bizarre. Yeah, that's so hard. It's traumatic. It's a dramatic. Yeah. I mean, I remember at the time I was really so zen and so calm and good spirited. And I was really, I don't know, it was like something in me needed to like, be calm and not freak out. And maybe it's my years of doing yoga that just helped me or I don't know, but
00:11:39
Speaker
I'm sure it's that plus like you were being a mom like that. Yeah. Moms we stay calm when crap's in the fan. Yeah. I mean, my husband tells me like I that I was just like fully awake afterwards. And then I I mean, it's just crazy how how how the how motherhood just works that just the instinct to like just be there ready. Even though you're tied to a table and you can't do exactly. Wow.
Noah's Short Life and Passing
00:12:09
Speaker
So yeah, he lived for a day and a half of just being oxygenated and ventilated at full blast for
00:12:16
Speaker
a day and a half until his heart couldn't take it anymore. That's when we had to make the decision to let him go. You had no idea that that was going to be the result because they had given you a good scenario, right? We knew that it was a possibility earlier on and even when, I guess it's more complex to talk about it, what he had, that we also found out a week before is that
00:12:46
Speaker
lymph liquid had developed into his lungs. And I remember at the time because I knew that it could happen with noon and fetuses. And I was very worried about it because the earlier it happens, the higher the chances that the baby doesn't make it. And I brought it up to the doctors and they were like, they brushed it off like it was not that bad.
00:13:08
Speaker
And I was like, okay, I guess it's not that bad. And I kept holding on to hope. But it was really just that last week that the possibility of him not making it became a near reality. So yeah, before that, it was definitely not part of the prognosis.
00:13:28
Speaker
I mean you spent time with him obviously when he was in the NICU but you had a C-section so I'm sure that was a little hard and then after he passed away and you decided that you know you were going to let him go and you know stop suffering which is such a hard thing to do. I can't imagine having to do that.
00:13:45
Speaker
Yeah, make that decision. Do you spend time with him and hold him? Yeah, that's the thing. The NICU team was like night and day from the prenatal care. They were incredible. They had a family room for us and they basically just stripped him of any unnecessary cables and medications and we were with him until he passed and then
00:14:13
Speaker
You know, there was a nurse and a doctor just for us and they would explain to us what was going on. And then they just let us be with him until the end, until his last breath. That's really, really beautiful. And that was in Switzerland, correct? This was in Switzerland, yeah. I mean, because it's so similar here also the way they do things. I didn't, I was unaware of if it's similar or, but it sounds like it is very similar to the way they do things as far as like a children's hospital or something like that.
00:14:39
Speaker
Yeah. I know. Oh, I wasn't going to go back really fast. I wanted to ask you earlier when you had your ultrasound, because you found out like you did genetic testing while you were still pregnant, which I think is pretty rare. Usually the baby has like a syndrome. They would usually wait, I think in the US and I could be wrong, but they would usually wait.
00:15:01
Speaker
until the baby's born and then do testing. Did they see, like, what did they see on the ultrasound that made them think like they couldn't diagnose it? Let's just say they couldn't, you know, they couldn't say, okay, your baby looks like it has Down syndrome. Your baby looks like he has. Yeah. So I had the NIP test in the US and that was fine. So there was no Down syndrome or any other. So we were very pleased about that. And we thought, okay, we dodged the bullet.
00:15:26
Speaker
At 20 weeks, we had our anatomy ultrasound with my gynecologist, my OB-GYN. The ultrasound was actually very positive and he was very active and all fingers, all toes, and nothing was out of the ordinary. Then at the end, she mentioned something about the heart, but she was also very either diplomatic or unsure about it. She said that she couldn't see the heart properly, so she sent us to the university hospital for better imaging.
00:15:56
Speaker
a day or two later we had another or a week later maybe we had another appointment without university hospital and then they started to see all these like borderline numbers that were not like right you know like his head was slightly bigger his heart just didn't seem right like the ventricles were not the right size but obviously these are like
00:16:16
Speaker
pixel images. So they were these little things like, yeah, like, so it was mostly the head shape and the heart that were kind of red flags for them. And then they said that the eyes were slightly wider set than the normal. And that could be a number of thing, a number of syndrome. So we are our brain doing research and Google madness, you know, it takes you
00:16:42
Speaker
to all kinds of places. So we even found Noonan syndrome when we were trying to find out what it could be. And so they decided to do an amnio and then test my husband as well for do a blood test for him. And so to find out if we were carriers of anything. Yeah, there were just these little red flags that made the doctors think that it was a good idea to test.
00:17:03
Speaker
Yeah, that's so interesting. How was the transition going home after delivering and after spending your time with him?
Coping with Loss and Finding Hope
00:17:13
Speaker
Physically, I was surprised at how well I was physically. I was in the hospital after he died only for one more night. I remember I just really wanted to get out of there. That night I was afraid to fall asleep because I felt like I was not going to wake up
00:17:31
Speaker
It was like this like I can only describe it as this like just darkness like black that wanted to consume me and just take me in and swallow me whole life. Not even depression it was just like real like darkness like like emptiness.
00:17:47
Speaker
Yeah, so I got home and it's funny because when we found out he was coming, I was freaking out because I realized I didn't have any preemie clothes. I texted a friend of mine that I have no clothes that will fit him when he arrives. She bought a couple things for me just to get me started. Then when I got home, those things were in the mailbox.
00:18:11
Speaker
Yeah, but it's funny. It had the opposite effect. I don't know. I wouldn't say happy. I wasn't happy that the clothes were there, but they gave me kind of, I don't know.
00:18:20
Speaker
Like hope. Yeah, it's funny. Like friends of mine kept saying that I probably wanted to like get rid of everything and just throw everything away. And I was just so glad that the things were still there and I could go through them and imagine what it would have been like rather than just because we never had the time to set up a nursery because I was in the hospital so early. Yeah, you're in the hospital for a month. Yeah. So just being able to have those things there kept me kind of in another head space.
00:18:50
Speaker
Yeah, we even set up the crib and we turned it into a shrine for like the first couple months and we would put things in it and just kind of, it became like a ritual to cope. But it was a very isolating experience, I must say. I don't think most people, in my case, I felt like my friends and my family were just not equipped to deal with us and didn't know how to be there for us. And so my husband and I,
00:19:20
Speaker
We felt very alone during that time. He was doing his master's at the time, so he took the semester off. And so I was lucky that he was with me during that time.
00:19:33
Speaker
and we had time to grieve together and just not deal with real life for a while. I know not everyone gets to do that. A lot of mothers have other kids and in our case it was just me and him just kind of being in our grief.
00:19:50
Speaker
We talk about that a lot at our support group, which if you can get to a support group, whether it's online or whatever it is, I think you really find a lot of healing just from hearing that everything you're saying, our families say all the time, especially like you feel really alone and like your families don't understand.
00:20:07
Speaker
Yeah. And it's really a shame because they don't realize that like, they say the baby's name, they say, I'm thinking about Noah today, or, you know, I'm thinking about you guys, they think it's going to make you sad. But in reality, you want to hear that. Yeah, you want to hear that. Yeah, they're so afraid to this day, they just like are so afraid of
00:20:25
Speaker
Mentioning his name. I mean, I think some of my friends and our parents have gotten a little bit better about it But uh, but yeah, it's funny how like people are just so afraid to to mention it I was fortunate enough that I did have find a support group In Switzerland. Yeah. Oh cool. And that was like the only real commitment during that time that I had once a week and It was like this other five ladies and it was
00:20:55
Speaker
guided by a woman who used to be a midwife and she was incredible and it was so good to connect with other moms who had gone through different kinds of pregnancy losses and yet to know that you're not alone because when it happens, I mean before it happened,
00:21:14
Speaker
I personally wasn't aware of how often it happens. It's not talked about. And then it's funny, I started to post about it on social media. Some people I knew from my past reached out and said, oh, a few years ago I had a miscarriage. And you're just like, oh wow, people really keep it to themselves and they don't share it. And you go through it on your own and it never happened.
00:21:42
Speaker
And that was very surprising to me and it made me so, I don't know, angry at how, at least in Western society, we deal with these things, you know, that there's no real space for grief. So many cultures have a way to like honor grief, you know, Dia de los Muertos or Shiva or, you know, the Ganges and what we don't have tools to cope and we just get on with it and
00:22:11
Speaker
pack it up and put it in a box and keep going. Yeah. Especially in the US, you get like no bereavement time. Yeah. It's crazy. You don't? Wow, that's incredible. I mean- Not really, not paid. I know for a lot of people, it's just you get your after birth, your six weeks or whatever, but I know like if you haven't worked at a job for a year, at least you don't get the 12 week, what is it, Nicole, like the FMLA or whatever. You don't get that.
00:22:36
Speaker
Yeah, after that your job doesn't even if you do get that your job doesn't have to hold your position for you after 12 weeks because some people a lot of people aren't ready to go back to work after 12 weeks. It's not that long. Yeah. I mean, I honestly wasn't ready to go back to work for like half a year. I was destroyed. You know, like, yeah, it's just like, when I when I tried to explain it to people, I say like, you know, when you go through
00:23:00
Speaker
different kinds of losses. Some of them are kind of like lateral, but this is full frontal, you know, because it's not just like someone you lost alongside, like, you know, you're, this is something that affects your, like, your going forward in life, you know, like, very directly, and then the physical toll of it as well, because you're not just dealing with the loss of the person you loved, you're dealing with the
00:23:29
Speaker
with a physical recovery as well at the same time and the hormones and I mean milk was coming out of my breasts for no baby, you know, and people don't get that, that it's not that I'm just like, oh, sad because my baby died. It's my whole body. It's changed. It's meant to do something that it cannot fulfill, you know, and yeah. If you could think back, what's like the kindest thing you remember someone doing for you during that time?
00:23:58
Speaker
Well, so the nurse that was at the NICU the day after Noah died, she was the one kind of like looking after him in the family room after he died. So she helped us with the prints, the hand and the footprints. She keeps in touch with me to this day. She sends, she just like is always checking in on me and has been like the sweetest, most constant person
00:24:24
Speaker
through all of this aside from another mom, Noonan syndrome as well, who
00:24:29
Speaker
We have never met in person, but through the Noonan syndrome group, we found each other and she just like remember every seventh of the month she would write to me. Every important date, like not even my parents or friends remember that, you know, it was my due date or that it was Noah's birthday. And she's the only person who's like on top of it. And it's so strange because we haven't even met. And she has quite a busy life and she has a baby.
00:24:59
Speaker
with Noonan syndrome and her own challenges with that. And she's like full on working mom. And so yeah, just like
00:25:08
Speaker
those two people have been incredible and just give me hope in humanity. Two people that weren't in your life that you didn't know. Isn't that crazy? Yeah. So crazy. How have you integrated your grief into your work as a fitness specialist and health coach or yoga practitioner? Well, I'm still working on that. Inspired by this woman in the support group in Switzerland, that's something that I'm trying to get started here.
00:25:38
Speaker
It's been a bit of a struggle to, to get the word out, but that's kind of like where I feel like my purpose is now helping women through perinatal loss in their physical and emotional recovery, because that's kind of it. I remember so when Noah died, I had to keep my continuing education for my personal trainer certification going. And I found one on postpartum and prenatal and I was like, okay, this is
00:26:06
Speaker
pretty relevant because I'm actually going through it right now. And I was appalled to see that the curriculum has nothing mentioning
00:26:14
Speaker
how to deal with clients who are going through postpartum challenges, but who don't have a baby because they lost their baby. Like how, what is the language that you use? Uh, what kind of exercises because you don't need to be carrying a stroller or a buggy or, or a car seat. And, but also, yeah, I remember I was subscribed to one of these postpartum, um, websites and doing the exercises through the course. And he was like,
00:26:43
Speaker
motherhood is hard, but at least you get to bring your baby home. And I remember every time, the language was so not right for me.
Supporting Others Through Perinatal Loss
00:26:52
Speaker
And I powered through it, but it was so painful mentally and emotionally to hear these things being said that were not speaking to me. So that's kind of where I, at least the hope for me is to change that and create
00:27:09
Speaker
something for moms that speaks to them because I know we're not so many, but I feel like we're probably enough women that they deserve a space. Yes. It's one in four. So one in four clients will have pregnancy or infant loss and there should be some kind of language for them. Absolutely. Yeah. So do you currently, are you running a group right now or are you trying to form one? I'm trying to form one. Yeah.
00:27:36
Speaker
If someone was looking for your group or looking to join, how could they find you? Like what website, certain website or company you work with? I was partnering with the Center for the Spiritual Journey in Chatham. This is in Cape Cod. I don't currently have a website anymore because yeah, through the pregnancy and everything, I just kind of, as a health coach, I just stopped the website.
00:28:03
Speaker
On Instagram, you can find me on Mel's Life Lab, and I can work with people individually or directly if they need anything as well. Yeah, at the center, that's where I was hoping to at least start the first support group. And maybe, maybe someone listens and they sign up and... Yeah, absolutely. That would be great.
00:28:25
Speaker
Yeah. I think hearing your story, people can relate and there's, oh my gosh, like they don't realize that there's someone that can relate to them because like you said, it's not really talked about that much. Yeah. The work you're doing is really important through our support group. We've done like dance classes. We've always wanted to do a yoga class. I wish you lived close to us because those are so healing, so healing. We've asked many people to do it. Um, and it's really hard to find someone to just donate just one time, just donate your time. Yeah.
00:28:53
Speaker
Well, I'll come one time. I know. Come to New Jersey. I mean, it's not that far. We can, it's like four or five hours. You're further down. Me and Nicole would probably rather come there than. Yeah. It sounds really beautiful. Yeah. Especially come see the snow. Yeah. Yeah. It hasn't snowed yet, but it's coming. It's coming. It's coming. So how did the loss of Noah affect your relationship? And do you have like any advice on protecting your marriage for someone going through grief and loss?
00:29:23
Speaker
I was very fortunate that my husband and I have always been able to communicate very well. And he was honestly like this whole experience made me fall in love with him all over again because he was super dad through all of it. And I saw another side of him. You can really tell someone's character and like in the thick of things. And I think the thing that I would say as a tip and advice is that
00:29:52
Speaker
don't assume that your partner is not going through grief. It might be expressed or manifested differently, but as long as you can talk about it and acknowledge that they're going through their own grief, then you shared something that no one else will ever understand and you should not take that for granted.
00:30:15
Speaker
It's so sad that a lot of relationships suffer after such a thing when such a thing should make a relationship so much stronger, I believe. Because who else is going to understand what you went through as much as your partner? I mean, just talk to your partner, ask for help.
00:30:33
Speaker
Go to therapy. Just don't be afraid to use all the resources that are available or are not available to you. During that time that you're not able to do anything else but grief, just use that time to work with your partner to look for that support. Because I think that's the only person you have in that process.
00:30:55
Speaker
Yeah, that's so true. I think where you see the breakdown of a relationship when this happens is that a lot of women expect their husbands or vice versa, the husbands expect the women, the moms to grieve a certain way because we grieve differently because boys are raised differently than girls.
00:31:14
Speaker
Generally, you're not going to grieve exactly the same, but you put your expectations on them. It's hard to do. You can't do that, but that's just what happens sometimes. But even if it happens, even if it happens, talk about it. Be candid about your expectations and they might not be met, but that's okay too.
00:31:33
Speaker
It's just creating a barrier with your partner is not gonna help you through it. It's very true. Yeah. So besides the advice, because you gave really good advice for working with your partner during grief, but do you have any advice for parents newly going through the loss of their baby that maybe you wish you knew? I think honestly, don't expect grief to have some kind of timeline or to go in a straight line, leaning to rituals, no matter how like,
00:32:01
Speaker
out there they seem my therapist said at the time as long as you're not hurting yourself or anyone else anything goes like really like whatever like me with my crib building the crib and and using it as a shrine like whatever helps you feel closer to your child and and to the grief just don't be afraid of it don't be afraid to go a little bit cuckoo during that time i think you're allowed you survived the unsurvivable so it's okay to go a little bit crazy and
00:32:30
Speaker
And I think also another advice is that don't be afraid to lose more people in the process because I think you'll gain better people and the ones that stay are real gems in your life. I think a lot of people will flee when you go through something like that because they don't know how to be there for you, how to deal with you or
00:32:52
Speaker
But I think a lot of wonderful people come as well. And it's hard because it feels like a double loss sometimes. But yeah, be forgiving to yourself. Be kinder to yourself. As I said, anything goes as long as you're not hurting yourself or anyone else.
00:33:10
Speaker
I think she just gave my favorite advice. I think that was my favorite advice. That was really good. Good advice. I remember in nursing school. I went to nursing school after my daughter passed away. And there was a question on a test that bothered me. And the question was about grief. And it said, this mom who lost her baby is still, or her child, still has the room set up a year later. She didn't take the kid's stuff out of the room.
00:33:41
Speaker
What's an appropriate timeline for that? Like what's the correct timeline? And I thought there's no correct timeline. So I answered that and it was wrong. And I thought, how do you know? You know, the textbook, how do you know?
00:33:56
Speaker
But yeah, go a little cuckoo. Absolutely. I've done some crazy things in my grief for sure, but it helped me to get through. It's funny. In German, they say that grief is not a process because a process requires a beginning and an end. It's an integration because it's ongoing. It just takes a different shape
00:34:17
Speaker
as time passes, but it's always gonna be there. I mean, you see grandparents, I remember grandparents that you used to kind of laugh about it, but now you understand that they talk to their late husbands and or wives until their deathbed and you start to understand that yeah, what is that line between
00:34:37
Speaker
life and death. When you go through something like this, you live in that line. You don't live in this alive place anymore. You kind of live in both worlds. And why is that so wrong? It's just another layer of existence. As long as it doesn't keep you from enjoying your life in whatever new way it presents itself.
00:35:06
Speaker
Why can't grief be a part of it too? I mean, I feel like it makes me look at nature very differently. It makes me not take a lot of things for granted. So grief is, I mean, it's shitty to say a good thing because it sucks, but putting it aside is not the answer. Yeah. And I would say like I'm a hundred percent a better person having gone through grief than I was before. Completely different person, but so much better. Yeah.
00:35:34
Speaker
I heard a lot of bad stories about you before this happened. Have you and your husband considered having another baby?
Hopes for Future Pregnancies
00:35:48
Speaker
That's funny because for me, when I was pregnant, Noah was my only child. And I remember when even when the conversation of termination happened, I was like, nope,
00:36:01
Speaker
And I knew his name before he was born and, you know, it was like, and I go back to that story of the, of the baby clothes in the mailbox. And it's funny that kind of spark that like need to try again and see my husband being such a wonderful father.
00:36:17
Speaker
It just made me want to give that to him, you know, and once that like motherhood faucet is on, you cannot turn it off. So I would love to try again. It's just at the moment, it hasn't happened so easily as the first time. So who knows what will happen.
00:36:34
Speaker
I think we find that a lot of our families says it happens. And I don't know if grief has something to do with it. You feel like you are totally open, but they call it secondary infertility. Is it really? I don't know. But a lot of our families experience that and seek treatment. And treatment, it always pretty much always helps.
00:36:56
Speaker
Yeah. But then we say like, just relax, it'll happen. It's not so easy. Yeah, that's the worst thing you can say to someone going through this. And also, I think my fear, honestly, I mean, we only started trying because of the C-section a few months ago. But I think my biggest fear of treatment is finding out that it's
00:37:19
Speaker
unexplained infertility and then not knowing what to do about it because I feel like I've been doing a lot of the things you do for unexplained infertility and coming from like a health background and you're doing the research and trying to like get rid of all the bad toxins in your house and eat the right things and the supplements so you can drive yourself crazy. So I think I'm afraid of like being going to the doctor and being told that everything's fine with you. It's
00:37:47
Speaker
it can be explained and being left back at square one. But I guess I have to make myself brave. You know, you said it was only a few months so far. Yeah, but I guess I'm turning 40 in a month, in a month and a half. Well, let me tell you that I have a portrait studio and I have two moms last year and they both gave birth to their first babies at 47 years old. Yes, and they are
00:38:12
Speaker
their babies are perfect. They're wonderful. So I'm like, just seeing these two women, I tell everybody now you have time, you have a little bit of time. I mean, I know my cycles are still there. They're, they're regular. They're strong. So I'm like, okay, so I'm trying to like, keep it set and just go with it. But be positive. Yeah. But it's, it's hard because you know, you know what you want. You know that it's just like,
00:38:37
Speaker
It's funny, like before Noah, I was one of these women who I didn't need to be a mother to feel fulfilled. It was something that if it happened, great. But once you experienced that level of love or once you go through something like that, it's just like, how can you picture your life going any other way? And I guess it's something that I might have to grieve in the future, you know?
00:39:02
Speaker
but I'm not ready to grieve motherhood as well as my son at this point, so we'll see.
00:39:09
Speaker
I wish you the best of luck with that. Thank you. Do you have any upcoming events or support groups? Do you have any coming up? No, at this point is open. I mean, if anyone wants to sign up, we just need the minimum of at least six women so that it can be helpful. But if anyone needs one-on-one support, I'm always here open for anyone who needs the support for sure.
00:39:36
Speaker
are you involved in any support groups local to where you live right now no i'm not i'm not are there any or you don't i think i found something online kind of but i honestly i find that online can be helpful to an extent i i like i like seeing people in person and
00:39:54
Speaker
And that was something with my support group in Switzerland that was so good that you could meet up for coffee and talk and vent about how shitty everything is going and not feel bad about it. And even have like your morbid jokes about grief.
00:40:10
Speaker
You know, so, yeah, there's something about being able to like connect with people in person face to face that. Yeah, completely. And after COVID, it's just like I'm over it. I don't want to be in front of a screen more than I have to, honestly. Absolutely. Is there anything that we didn't cover that you wanted to talk about?
00:40:32
Speaker
I mean, there was a question you asked about Noonan syndrome, that what is it? Yeah, so only person I know is one of my good friends now, whose baby I took pictures of in the hospital after she passed away, but they didn't have any idea about it. So I think it's really interesting to me, like I said, that your doctors saw like those little tiny mom. So it's really interesting that they found that on ultrasound because in her ultrasounds, they didn't find
00:40:58
Speaker
not anything. And then when she was born, they, you know, they took her to the NICU because of her breathing. Yeah, discharged her because of her lungs. And they thought maybe it was the c-section. And they discharged her two days later. And then that next night she passed away. Wow. Okay. Yeah, that's how and then they had an autopsy into genetic testing. And that's how they found it. But um, yeah, I'm really interested to hear more about the Newton syndrome. Well, it's a it's a bit of an umbrella term because it's a genetic
00:41:26
Speaker
disorder that usually is inherited, but in some cases like ours, it can happen spontaneously. It can affect different genes in, yeah, different genes. I think there are like 11 genes that can be affected. Noah's gene mutation was one of the rare kinds. It's usually not a death sentence and people with the syndrome live normal lives.
00:41:54
Speaker
normal life expectancy, but it is a little bit of a jack in the box of health conditions. Like the big thing that is, um, that is common with Noonan syndrome is the facial features of wider set eyes and the lower set of ears. And, but even that it's such a spectrum. Like some people have Noonan syndrome and you couldn't tell. So it can be very non-telling to very obvious physically, but also health-wise. Some people don't have any health problems at all.
00:42:23
Speaker
But it's very common to have health conditions. In Noah's case, he had some heart malformations that would have needed treatment if he had survived. It's very common to have issues depending on which mutation, issues with the lymphatic system.
00:42:39
Speaker
And from what I've heard a lot of challenges in early development with feeding and with motor skills, intellectually kids with Noonan can be like of normal intelligence or with some disabilities. So it's really like such a broad spectrum of things that could or could not be, I think the main defining thing is the features that are very unique. Yeah. Right. Yeah. And you both are not carriers. You said it just happened.
00:43:09
Speaker
Yeah. Wow.
Understanding Noonan Syndrome
00:43:11
Speaker
Yeah. It's usually inherited. But yeah, in our case, it was spontaneous. The geneticists said that maybe there is a mistake expression in one of the genes, maybe mine or my husband, but they couldn't, they tested me three times and my husband twice and nothing came up. But to this day, we're not sure.
00:43:34
Speaker
So are you worried like for a subsequent pregnancy that this could happen again or they're saying no, it's just like a fluke thing? It's well, that's the thing that it's it's a fluke thing. But again, like talking about statistics, we were 1% of 1%. So you look at statistics very differently when you go through something like this. So you are a statistic. Yeah, when you are the statistics. Exactly. So
00:44:02
Speaker
So it's not like a strong fear, but it's always a concern, yeah, for sure. Even though the probability is 1%. Yeah. Yeah. Melanie, thank you so much for being here and sharing the story of Noah with us. If you want to send some love to Melanie, email us at storyteller at the blindsided.com. Thank you for listening and we'll see you next episode.
00:44:30
Speaker
Thank you so much for tuning into the latest episode of The Blindsided Podcast. We truly appreciate your support and time you spent with us. If you have a personal story you'd like to share on the show, don't hesitate to reach out to us. You can send us an email at nicolewiththeblindsided.com or desiré at theblindsided.com.
00:44:49
Speaker
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00:45:03
Speaker
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