64: Parenting a Child with Symbrachydactyly | Natalie Fries

Mothers of Misfits Podcast Epiosde 64 - Natalie Fries

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Summary:

Natalie’s joy quickly turned to panic when she looked down at her newborn baby and realized that her hand was not fully formed. Now, several years and several surgeries later, Natalie talks about the incredible process of giving Brielle function in her left hand.

Quotes:
  • “I looked down, I remember she was on my chest and I looked down, and here her little hand was all balled up and all fused together. And at that moment, my world just crushed.” – Natalie Fries
  • “I had five different sonograms and we didn’t know anything was wrong.” – Natalie Fries
  • “It definitely looks different, but it’s unique and that makes Brielle Brielle, and it actually strikes up some interesting conversations sometimes with strangers. It strikes up conversations with us as a family, just talking about how everyone’s different and it doesn’t mean that that’s a bad thing.” – Natalie Fries
  • “Though our stories might be different, there’s so much that we have in common. And we really are a band of mothers.” – Emily Melious
  • “There’s something about motherhood that takes us to a place we never thought we could go in our bravery, our courage, our love for someone.” – Emily Melious
  • “I would love for her to, quote unquote, be normal and not have to deal with this, but at the same time, like I think that it’s changed our family. I think it’s changed our perspectives. I think that it changed my faith, and I would not change anything about it so far.” – Natalie Fries
  • “Breathe, just breathe. Make sure you have a good community around you because it’s too hard to do this alone. You know, if you believe in God, rely on God. If you have an incredible relationship with your mom, call your mom. Don’t try to do this alone.” – Natalie Fries
Highlights:
  • 0:53 – Brielle’s story
  • 13:54 – What it means to be a Mother of Misfits
  • 20:07 – Advice for moms getting a new diagnosis
View Full Transcript

Mothers of Misfits: Welcome to the Mothers of Misfits podcast. Join me for conversations about how to advocate for our kids in a one size fits all world. Be sure to subscribe, so you never miss an episode.

[00:00:15] Emily Melious: Welcome back to the Mothers of Misfits podcast. We’re so glad you’re joining us for another episode. And this is a really exciting one for me because we’re talking to a longtime friend of mine, Natalie Fries. Natalie is a mom of four. She’s a Christian, a runner, a registered nurse, a clean beauty advocate, and a military wife. She was born and raised right here in Pittsburgh where I am, but she’s lived in Wichita, Kansas for almost 17 years. Natalie, I’m so glad you’re joining us today.

[00:00:48]Natalie Fries: It is really fun to meet up with you again and just catch up on life.

[00:00:53]Emily Melious: Yeah so let’s dive right in. We’re going to focus on your daughter Brielle today, and she was born with a limb deformity. And it was a surprise to you because you weren’t aware prior to her birth, so take us back to that day in the hospital, brielle’s birthday, and what happened.

[00:01:11]Natalie Fries: So Brielle was my second born, with my first daughter I wanted a natural birth. And you may think this has nothing to do with the story, but it does. I really, really wanted it. I made it almost to the end and I ended up getting an epidural and I was just bummed at myself cause I didn’t like, make it to the end of that marathon. So when I was pregnant with Brielle, my pregnancy with Brielle was flawless. I felt great. I was running until 30 weeks, working out, I did everything healthy that I thought, you know, I drank a lot of water. I went to all my doctor’s appointments. I peeled the skin off of apples because I knew that there was a lot of pesticides in them. I was working as a registered nurse in the emergency department about one day a week or so like a 12 hour shift.

[00:01:55] And I found a doula, and I read a bunch of birthing books and I’m like, I’m going to do it this time. And so everything was great, until my due date came and went, and my doctors were like, you need to come in and have a sonogram. My fluid was low, and so they said, well we’re going to have to induce you. And so right there I was like, my plan is crushed, right? I’m not in charge anymore because I have to go be induced. I didn’t go to the hospital the way that they said, I went home. I said, call me if you want me to come in, but I don’t want to just come because the sono tech said to come.

[00:02:31] So the next day, my doctor called and said, Natalie, where are you? We’re expecting you. And I said, can this be on my terms? Can we try to do it as natural as possible? And she said, yes, we’ll try. So I come in, the midwife comes in, and everything goes pretty well. They induce me, and I end up making it through a pretty long labor completely drug-free. So exciting and so cool but I feel like it was kind of like, this perfect setup for what I needed, because I did not know what was going to happen the minute that she was born. And I was starting to get a little emotional, just thinking about this whole thing. I push and push and push, she ended up being whole like almost pound and a half bigger than my first. And it was very late at night, 11:00 PM, it was very peaceful. It was just my doctor, my nurse, one person at the table with, you know, all the tools and everything, and then Tristan. And it was like the most incredible experience of my life to give birth completely naturally.

[00:03:36] And there she was, you know, my healthy, chunky baby girl on my chest. And I had about like 10 or 15 seconds of just like pure bliss. Like you have all this pain, and then it’s gone. And you just have this warm, you know, squishy baby on your chest. It’s like the best feeling ever. And Tristan goes, oh no her hand. I said what? What do you mean her hand? And I looked down, I remember she was on my chest and I looked down, and here her little hand was all balled up and all fuse together. And at that moment, like, my world just crushed, like what? How did this happen? Like, oh my gosh let’s look at everything, let’s look at her other hand, let’s look at her feet, look at her face, like look at her body. What does this mean? I don’t know. And I was so overwhelmed with  this amazing experience and then just like that it changed. And we had no clue that this was going on. I had five different sonograms that we didn’t know anything was wrong.

[00:04:36] And I remember just as soon as I was like, amping up, amping up, what’s going on? What’s wrong what’s wrong what’s wrong? The nurses and the birth team was so amazing. They just, kind of like swarmed me. And they were like, it’s okay. Like it’s just her hand, she’s breathing, she’s beautiful, she’s healthy. She’s pink, look at her, like it’s okay. Like it’s going to be okay. And so, in the middle of my fear, I felt this sense of just like peace. I’m like, okay, this is not what I expected, but it’s going to be okay. And so, that led into, you know, a long night or just, you know, not sleeping and nursing and learning and looking at her.

[00:05:18] The next day turned into a genetic counselor coming in and them taking, you know, all these vials of blood to do genetic testing. And I had to take her down to the x-ray room, which I was very familiar with taking my own patients to, and sitting in a wheelchair, you know, cause they don’t let you walk after you have a baby.  Sitting in a wheelchair, listening to her for like 20 minute scream as they x-rayed every single bone in her entire body, from head to toe to see, you know, was there any other bones that were affected? Is there anything else wrong, you know, with her skull or her spine or anything else? And there was just a lot of unknowns and it was really scary. I was not in control at all. So that was something new for me because I always felt like I had a pretty good handle and control of my life. So, that was kind of the start of figuring out what was going on with her.

[00:06:14] Emily Melious: And when did you officially determine what happened to her hand?

[00:06:19]Natalie Fries: So it wasn’t until actually an entire month later. So they send me home with a newborn baby, with this little hand that, it was kind of hard because I felt, you know, a little bit ashamed at how I felt, because I mean it looked, it looked a little weird. It looked different. And I thought maybe parents or moms that had children that had some big difference or birth defect that they were just automatically accepting. And I really felt like maybe, I don’t know, like I just kind of wanted to like pull her little, her little covers over her hands so I, not so I couldn’t see it and so it was hidden, but just, I don’t know. I just like, I just didn’t want other people to see it and ask because we didn’t know what was going on yet.

[00:07:10] So a whole month later, you know, I worried and I prayed about the situation and I thought, you know, I just don’t know what’s going on. And so we get a call from a genetic doctor and they say, well, we’re going to need you to come in. Well, what does that mean? I didn’t know what that meant. And so I said, okay we’ll make an appointment. And we hang up and I thought, oh it must be something really bad, right? Because they didn’t even tell me on the phone, like what’s wrong? Like, you know, does she have something that we should know about now? So I called back and I said, like, I am the mom, this is my daughter, I demand that you tell me what she has or what’s going on, because I can’t wait a week, another week to find out what’s wrong with my baby.

[00:07:57]Emily Melious: You’ll be in tournament.

[00:07:59] Natalie Fries: Yeah. I mean I already was like I balled my eyes all everyday thinking like, what’s wrong? I don’t know what’s wrong. So finally they said, well we did find something genetically that we don’t know, we have to actually do more research. So it turns out that their best guess is that it’s actually not anything genetic. Their best guess, the geneticists says, is that she had a blood clot in her hand when her hand was forming six weeks gestation. So I mean she was tiny, tiny, tiny, when those little finger buds start to form and the web space goes away. If she had some little vascular disruption in the top of her hand, it just didn’t form properly for the rest of the way.

[00:08:44] So it was kind of like a fluke occurrence, one in about 40,000. So from there, it’s kind of an interesting story. We were church hunting while we were pregnant for a new church that we felt was, a little smaller, a little more family centered. The one that we were going to was more of like a mega church out here. It had maybe like only 1500 at the time, but we felt like we just didn’t know anyone very well. We didn’t connect very well. And we went to this new church and when we shook hands with the guy at the front door. He said, well I’ve never seen you here before. And we said, wow, this guy knows everybody here.

[00:09:20]I immediately got involved in a MOPS group. And when Brielle was born, I knew the children’s ministry director very well. And she said, you know that we have a hand surgeon that goes to our church. I said, really? That’s interesting because, I didn’t even know anyone at our last church, let alone, if someone was a surgeon. And so she was like, let me connect you. So she connected us with the surgeon. I spoke with them the same day after the church service. He got me in to see him. He actually said that he didn’t feel comfortable doing the surgery with the extent of the way that her hand and bones were fused. And so he said, oh let me call up my good friend Charles in St. Louis. So Dr. Charles Goldfarb, who works at Washington University Pediatric Hospital, and also Shriners of St. Louis, ended up accepting us as a patient. And so we’ve made many trips back and forth to the Shriners Hospital of St. Louis, and he’s a fabulous, fabulous hand surgeon. He’s actually world renowned in some of his techniques and procedures. And so we felt like it was pretty interesting that we got hooked up with him so effortlessly, without having to really do any research on our own, we just felt like it was the perfect fit for us. And that’s when he told us, after meeting with us that her condition is called symbrachydactyly. So her limb, you can’t tell to the eye, but on an x-ray, her forearm of her left arm is just a tad bit shorter. And then her left hand is about half the size of her right hand. And so he gave us just all the confidence in the world that he could help to unfuse a couple of the fingers, give her the best function, best mobility, best outcome possible. And so far he’s delivered on that. It’s been pretty awesome.

[00:11:11] Emily Melious: What use does she have of that hand today?

[00:11:14] Natalie Fries: Oh my goodness. I wish that there was a video component to this because it’s unreal. The dexterity that she has in her hand now. So when she was 11 months old, they actually separated her pinky and her thumb. And so then she still had her three middle fingers fuse together. And then by the time she was three, her hand had grown enough that they were ready to do her second surgery and her middle finger actually didn’t have strong enough or big enough tendons that it would work if it was separated. Her web space between her thumb and her first finger was very small. And like she couldn’t grip onto like a gymnastics bar or a bike handle. So they made the ultimate decision to remove her middle finger from her hand, they actually cut, they amputated her middle finger. They cut her first finger, her index finger, moved it over, and then that created a deeper web space. So now she actually only has four, well, three fingers and thumb. So four total on her left hand. But she can ride her bike, she can hold on to the gymnastics bars, the swings, everything. I mean she, she is right-handed. I think she probably would have been right handed anyway, but she doesn’t really have any limitations at all.

[00:12:36] It definitely looks different, but it’s unique and that makes Brielle Brielle, and it actually strikes up some interesting conversations sometimes with strangers. It strikes up conversations with us as a family, just talking about how everyone’s different and it doesn’t mean that that’s a bad thing.

[00:12:54]And that sometimes, you know, situations that you think are unfortunate or, you know, why did this happen to me? And our story is still evolving. And I don’t know where this is going to lead us, but I had no idea that seven years later I would even be able to sit here and talk to you and maybe reach someone who’s in a place, you know, with a child thinking like I’m embarrassed about this, you know, does anyone else feel like this?

[00:13:23] Or I’m scared. Does anyone else feel like this? Or, you know, I don’t want to deal with this. I don’t even know what to do or what to think or how to put into words, anything about what’s going on with my child. I think that a lot of people can relate to this, you know, whether it’s their hand, whether it’s a learning disability, whether it’s any difference that they’re dealing with. So I like that it helps us to be able to relate more to people where they’re at. And I’m actually very thankful for it now.

[00:13:53] Emily Melious: Oh, well that’s my heart behind the podcast is being able to come together and relate to one another, support each other. No, we’re not alone. And though our stories might be different, there’s so much that we have in common. And we really are a band of mothers. You know, there’s  something about motherhood that takes us to a place we never thought we could go in our bravery, our courage, our love for someone. And I love that you talk about how you were, you know, that control freak, so to speak. Because I’m a total control freak too. I always joke that God has such a sense of humor because he threw you a big curve ball and it’s been so beautiful to see what’s happened when you don’t have any control.

[00:14:38] Natalie Fries: Yeah. And, you know, I held it together in the beginning for a long time. And I wasn’t sure if I was going to mention this part or not, but I think that so many people don’t, they leave out maybe some of the really ugly parts and just say like, oh yeah well she was born with this and we found a surgeon and we fixed it and now we’re great. Well, I mean, we still have to go through, you know, the neighbor who says like, oh she looks like a monster, and how to deal with that. Or, you know, fortunately Brielle has a very strong self-esteem and her personality is, I mean, she digs in the mud. She plays with bugs. She is like a strong little girl and not much bothers her.

[00:15:26] And so, I mean, she laughs at everything. She’s just amazing. She has the personality that is able to deal with something like this, perfectly. If it was my older daughter, it would be a completely different story, so it’s great. But it was not just, you know, we went from A to B and it was happy ending. Like there was a lot. A lot of grief, you know, I felt like I mourned the loss of having like a normal child, and having a normal newborn because you know, all my other friends. I was in the time of my life where everyone else was having babies, and their babies were fine. They didn’t have to go to these doctor’s appointments.

[00:16:08] They didn’t have to go to surgeries. They didn’t have to worry about any of this stuff. They didn’t have to constantly, I love that people were asking me questions, but I was so tired of saying symbrachydactyly. I was so tired of telling people, I don’t know what the outcome of this is. I don’t know what this means.

[00:16:28] I don’t know what the genetic testing will reveal. You know, like there was so many unknowns. I was so tired. Like I just wanted to be normal, and have a normal life. So I held it together for a while. I have this notebook of page after page of like Bible verses that I was just finding and dwelling on, and Brielle was not a good sleeper. My first was my one where I was like, you know, I’m amazing. I’m a good mom. This girl sleeps 12 hours a night. Like I did everything right. I read this book called Baby Wise and my baby did it. So like, I am A+. My second baby, I mean I threw that book out the window. I should have lit it on fire, cause I’m like.

[00:17:10] Emily Melious: It lied to me!

[00:17:12] Natalie Fries: She nursed every hour and a half around the clock. I was so sleep deprived. I was so worried about her future that I actually, I mean, my mental health suffered so severely that I started having panic attacks. Like I thought that that only happens to crazy people, that only happens to like weirdos. No, I was full-blown, like call my mom in the middle of the night at 2:00 AM because my heart was racing and I felt like I was going to die. Like weird stuff was happening to me because the stress just caught up with me, and the sleep deprivation caught up with me. And the feelings that I was having, it was just all kind of hit me. And when I scheduled her appointment to have surgery, when I got that on the calendar, I was just like, this is real. Like, I don’t know I was just so scared of so many things, so many things I wasn’t in control. And now I wasn’t in control of when I slept, I wasn’t in control of my body and how I was reacting to stress.

[00:18:12] I’ve had to let them wheel my baby back into a room and give them all kinds of drugs that I wasn’t familiar with, so there was a lot of hardships and a lot of ups and downs. And I ended up going to counseling for a little while, cause I’m like I can’t be like this. Why am I like this? So, it really has been a journey for sure. And I mean, I would love for her to, quote unquote, be normal and not have to deal with this, but at the same time, like I think that it’s changed our family. I think it’s changed our perspectives. I think that it changed my faith, and I would not change anything about it so far. So, I just, I love reflecting on it, and I love talking about it.

[00:18:59]We didn’t know what words to use. You know, do you say you have a birth defect, or is it a limb deformity, or a condition? You know, you don’t want to hurt people’s feelings and bring something up and ask them, what’s wrong with your child or, you know, why did this happen? But honestly, and other people may be different, but for us it was actually a breath of fresh air when someone actually wanted to ask you. Instead of, you know, just giving you kind of a side eye, like oh you know, why does your kid have a cast on like, oh she must have let her kid fall off the dresser or something.

[00:19:29] No, she had surgery, like just to ask. I mean, if you’re curious and you want to know and you care about people, I mean, people like to talk about themselves. They like to talk about their kids, for the most part. But I think that people just want to be noticed in a good way and they’d love to share their story or whatever’s going on. So it’s helped me to be able to approach other people and feel a little bit more comfortable just knowing like we’re all people, we’re all moms, you know, like it’s our kids. It’s not some alien thing, like it’s a child. It’s a child. They’re all different. All of us are different, and we’re all special and it’s just a really cool thing.

[00:20:07] Emily Melious: What would you say, Natalie, to a mom who just got a new diagnosis for her child?

[00:20:12] Natalie Fries: I would say, breathe, just breathe. Make sure that you have a good community around you because it’s too hard to do this alone. You know, if you believe in God, rely on God. If you have an incredible relationship with your mom, call your mom. Don’t try to do this alone. And certainly don’t go to Google and just start looking up stuff, because that’s the worst of the worst. And it’s scary. And truly, truly just take one day at a time. One day at a time. And, don’t look too far ahead because we don’t know what the next minute holds for us. We don’t know what the next hour or day, and anything can change. And so just, love on your child. Accept them, hug them, kiss them, and just be thankful for them.

[00:21:04] Emily Melious: What good advice for all of us, no matter what we’re facing. And I love, just breathe. I forget to do that sometimes, in the craziness of it all. Just breathing, remembering what’s most important. It takes me back to what they told you in the hospital room, when you had Brielle, and you were worried about, oh my goodness her hand. And the nurses said to you, she’s a beautiful baby girl, and you’ve got so much to be excited about and grateful for. I love that. Well we’re going to have you back, Natalie, because we’re going to have a whole other conversation about your other daughter, Morgan, who was diagnosed with juvenile arthritis when she was only 20 months old.

[00:21:48] So everybody stay tuned because you’re going to get more of Natalie, whole other story there. I’m so glad you came on today, Natalie, and shared with us your beautiful family story, and there’s still more to come. I admire your bravery. I admire your faith through all of this, these challenges when there’s no control. I admire your openness and honesty with all of us. Thank you so much.

[00:22:11]Natalie Fries: Thank you, Emily. It was great to be here.

[00:22:16] Mothers of Misfits: Thanks for joining us for this episode of the Mothers of Misfits podcast. Make sure to subscribe, so you never miss an episode. We also invite you to visit us at MothersOfMisfits.com.

Speakers:

Emily Melious

Emily Melious

Talent Management Consultant | Career Coach | Podcast Host

HOST
Natalie Fries

Natalie Fries

Nurse | Mom
GUEST

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