Ep. 86: Karley’s Story | Two Rare Syndromes, Playing the What-If Game, and Appointments on The Daily




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With more than 20 therapists and doctors for her two daughters, Karley spends almost every day at appointments with her two daughters. Her three-year-old Nora has two rare syndromes which come along with many sub-diagnoses including hydrocephalus.

In this episode, Karley shares what it was like to receive a prenatal diagnosis and to play the waiting game until birth. She also shares the incredible experience of seeing her baby smile and open her eyes for the first time after a life-saving shunt was placed. We also dig into the dynamics of almost-daily appointments for her family.

Episode Transcript

Karley Henderson  0:00 

It's hard because we spend so much time either in the car or at an actual appointment, so there's some days they don't even get to play with their toys because we are gone all day.


Madeline Cheney  0:12 

Hey, you're listening to the Rare Life. I'm your host Madeline Cheney and I am so excited to give you episode 86: Karley's Story. Karley has two young daughters, six-year-old Addie and three-year-old Nora, and they are both disabled. We decided to focus in on Nora because she is more medically complex. Nora has not one, but two rare syndromes, which are the cause of many birth defects and medical complexities. In this episode, Karley shares what it was like to receive a prenatal diagnosis, the months that followed Nora's birth, and with more than 20 therapists and doctors between the two girls, appointment day is almost every single day. We dig into what that is like for her and her family. Karley, her husband Joe, and her two daughters live in Southern Illinois. She claims her occupation is "full-time Medical Mom," which I think is so great. Karley is a lover of comfy clothes and of hiking. Let's dive in. Hi Karley, welcome to the show.


Karley Henderson  1:42 

Thank you for having me.


Madeline Cheney  1:44 

Of course, I'm excited to hear your story about having Nora in your life and what that's been like for you. I would love to start out with you sharing just a little bit about Nora and what makes her unique, and a little bit about her medical stuff.


Karley Henderson  2:04 

Yeah, so there is a lot of ways to describe Nora. She is very wild, she is happy, funny, she's just hilarious. She loves laughing. I call her a Sour Patch Kid because she'll come up to me and kind of caress my cheek, she'll look into my eyes, give me a kiss, and then she usually slaps me and runs away laughing. She's very much a Sour Patch. She loves being outside and she loves playing. She graduated from her orthotics last year, and we kind of joke that she Forrest Gump'ed her way out of them just so she could run faster. She is just, she's incredible. I'm biased, but she is just amazing.


Madeline Cheney  2:54 

She seems like it, even just looking at your Instagram and seeing pictures of her and a few the stories about her, I'm like, "Oh, she seems so cool. I love her."


Karley Henderson  3:05 

She knows that too, and she'll use it.


Madeline Cheney  3:10 

So, if you were in the grocery store or something and some random stranger was like, What is she dealing with, medically speaking?" What is your one sentence sum-up of all the medical stuff? I know it's tricky, but what would you say to a stranger in the grocery store?


Karley Henderson  3:27 

It's so hard because she has so many. I'll either say a lot and leave it at that, depending on my mood, or her biggest one. I'll usually just tell them she has rare genetic conditions because nobody actually knows any of her genetic conditions or I'll say hydrocephalus because that has been her biggest struggle.


Madeline Cheney  3:51 

Okay, awesome. Well, not awesome but you summed it up well. I liked that a lot, the "We're not talking about this right now." I think it's good to have a bow-out because we don't owe strangers our child's medical records or anything.


Karley Henderson  4:11 

We would be there all day if I really went into it. It just depends on my sassiness of the day.


Madeline Cheney  4:18 

Oh, that's awesome. So, let's dive in. I know that you didn't receive her diagnoses until she was a baby, so obviously there was no prenatal diagnosis but I'm curious, was there anything about her pregnancy that gave you a heads-up that there might be something going on medically that was different from your older daughter Addie?


Karley Henderson  4:43 

We actually found out about ventriculomegaly while I was pregnant. I was seeing a high-risk OB along with my regular OB due to a miscarriage I previously had, and some family history. The plan was that I was supposed to stop the high-risk OB at my anatomy scan at the 20-week ultrasound. We went in for my anatomy scan and my husband, Joe, came with me, which was very rare, he usually wasn't able to go to a lot of them. The tech was doing her thing, and looking back, I feel like she must have had a really good poker face because I had no idea anything was going on until she left the room. When she was leaving the room, she made a statement. She said, "I'm gonna go show the doctors these, and he'll probably want to come talk to you," and then she left. I started crying immediately. My husband looked at me like I was crazy because he had no idea why. I looked at him and I said, "The doctor doesn't see you in the ultrasound, something is wrong." So the doctor came in and told us that she had fluid on her ventricles, which we had no idea what it meant. I was going to need a fetal MRI and weekly ultrasounds. So it was a long 20 weeks after that.


Madeline Cheney  6:21 

Yeah. So, can you freshen my memory too, fluid on the ventricles, that is a part of the brain, right?


Karley Henderson  6:29 

Correct. So ventriculomegaly progresses into hydrocephalus.


Madeline Cheney  6:34 

Okay. That's really interesting. You may know from listening to episodes but that's the same kind of ultrasound situation I was in with Kimball and, since you're seeing a high-risk OB, that's interesting. I wonder, did you feel like you were expecting something to happen or to find something out? Or were you just like, "We're just checking out, this is it"?


Karley Henderson  7:01 

I didn't really expect anything. I knew I was very big because I had extra amniotic fluid, however, like I mentioned, the plan was that it was supposed to be my last appointment with them. We had to drive about 40 minutes for this one, so I was like, "Thankfully, we're done with them." And then there we were.


Madeline Cheney  7:26 

Yeah. I bet that was a lot to take in. What happened after the doctor told you that and you were heading home? What was going through your mind and in your heart? What was going on emotionally for you and your husband?


Karley Henderson  7:40 

I honestly don't remember a lot of it, I kind of zoned out. Of course there was lots of googling, which I always try not to do but it sucks you in. So, it was a big toll on us. There were a lot of new and unknown terms that we didn't know what they were, but I've always been a 'What if?' person, so it was a lot of, "What if it was my first MRI, with a big belly and that tiny MRI machine?" It was terrifying. Not to mention the weekly ultrasounds after that, it took a lot. We had Addie as well, who was three at the time. It was hard.


Madeline Cheney  8:26 

Yeah. I think, that's crazy because I was like, "Oh, she found out after she was born." But that's really it, it does start the prenatal thing. That's just an interesting situation because you have this sort of limbo moment where you're waiting for the baby to come. They're not there yet so you're kind of just guessing what it's gonna be like or what they're gonna be like, but then you're also kind of already jumping into the whole medical world because, like you said, you'd never been in an MRI before and there are all of these new terms. It's a lot, you're worrying about your baby and the 'what ifs', and it can be really heavy.


Karley Henderson  9:10 

And you feel like you're supposed to prepare, it should be better that you know, but it's not, at least I don't think so. You might think you're prepared but you're not prepared until you're in that situation, until it's happening. You don't know what it's going to be, doctors are human, they make mistakes, they don't know what's happening. Nobody truly knows what it's going to be like until they're in the moment.


Madeline Cheney  9:37 

Yeah. So you say that it was worse for you to know ahead of time, what kind of things were happening for you that made you feel like you were not prepared for her arrival?


Karley Henderson  9:53 

I feel like it would have been bad either way. I don't know if it'd be better knowing or not knowing, it was hard and a lot of, 'What's my baby going to be like?' 'What is this going to look like for our family dynamic?' We had a meeting with a pediatric neurosurgeon, which was supposed to be very helpful. However, we ended up with a very arrogant doctor. He was on his phone the entire meeting, he only gave yes or no answers and didn't explain anything. And I'm a pregnant woman who just found out this news about my daughter, so of course I'm emotional. Then I was angry, and it was less than helpful. We felt like we could have been guided a little bit more than we were. We just had no idea what to expect.


Madeline Cheney  10:47 

Yeah. That 'What if?' game is so scary. Just being perched on the edge of this cliff and looking over, like, it's tough. It is tough to just guess or wonder. Did they mention anything about chances of her not making it after being born, was there any kind of fear that way?


Karley Henderson  11:13 

So they recommended an amniocentesis, they highly recommended it. We ended up turning it down due to the risk of miscarriage. They basically told us that they did not know what she was going to be like when she was born. Cognitively, they didn't know. Honestly, I feel like that's all we really got. Our genetic counselor was very sweet and she was helpful, however, they didn't know what was causing it. They didn't know if anything else was going to be there when she was born, which is kind of funny considering I was getting weekly ultrasound. It was just this one giant unknown.


Madeline Cheney  12:02 

Which is so scary. The unknown is so scary because, from my experience, my brain went to worst possible case scenarios. It's hard to see a lot of hope. It's hard to see, like, "And there'll be this adorable kid that I love!" That kind of just takes a backseat when you're worried about their health and their safety, and what life might be like.


Karley Henderson  12:29 

Yes, I feel like that becomes your main focus, and people are always encouraging to look on the bright side. Then I'm the person that's like, "Well, what if this happens though?" It's hard, I feel like you're blinded by your worry.


Madeline Cheney  12:45 

Yes, that's a really good way to put it, very blinded by the worry. Usually blinded to the human-ness of them, I guess.


Karley Henderson  12:57 

There's a child in them, right.


Madeline Cheney  13:01 

Exactly, I feel like you're kind of robbed of that typical pregnancy experience where you're just anticipating a cute baby that you will love because you're worried about them and all that.


Karley Henderson  13:15 

You are, 100 percent. It's just the joy of the pregnancy. It's supposed to be a beautiful time, but instead you're at the doctor's every week.


Madeline Cheney  13:25 

Yeah. Just from thinking back about when I was pregnant with Kimball, it was a similar thing where we had weekly ultrasounds and stuff to monitor, and it was such a rollercoaster, but I do remember this interesting feeling that I had with him that I did not have with my older daughter, and I wonder if you had a similar experience. There was this huge amount of protectiveness that aroused because of the situation. I was like, "Oh my gosh, this is my baby. I will do whatever it takes to get him here." I did not necessarily have those kinds of feelings with Wendy. And I'm sure that if we had been worried about her, then those emotions would have absolutely come up, but thinking back on it, there was thing tender silver lining among all of that, it was that feeling of protective-ness over this child.


Karley Henderson  14:21 

Right. I can relate to that, and that's one of the reasons we turned down the amniocentesis, it just wasn't worth it for us. It didn't matter what they said, nobody was going to stick a needle in my stomach and poke her.


Madeline Cheney  14:38 

Yeah. Any chances that it would hurt her and the answer would be no. Okay, so take us to birth. What was that like?


Karley Henderson  14:51 

Oh, gosh. So, as I mentioned, I had a lot of amniotic fluid, which we found out later was related to her genetics, and on top that she was measuring at 10 pounds, 12 ounces. And I got a little cocky because Addie was eight pounds, eight ounces. So I was like, "Oh, I could do 10 pounds, it's not that much more. I can handle it." So they were going to let me try to have her vaginally, so I was induced at 38 weeks. We live close to St. Louis so we went over to that hospital because it's connected to the NICU at Children's. So I got there with my husband and they start the induction, and, mind you, I was not having any contractions, there was nothing prior to this. The OB that was working that day came in and said, "There is absolutely no way you're having her vaginally." I was very upset at first, mainly because I was having contractions now since they started my induction, and it felt not quite like a failure but it was scarier because I knew my recovery would be worse and we didn't know what to expect with her after she was born, but they explained that if I were to have her vaginally, and if she were to get stuck, they would not be able to get her out safely because of her head. So, of course I agreed to it. I waited until that evening until we were able to do the C-section. Everything went good, I flooded the table because of all my fluid, so that was the big ordeal. After the C-section, she was out and everything was looking good. They actually let her stay in my room that night. So the next morning, Joe actually had to go home because we got a call that Addie he was sick. So he left, and not even an hour later, the pediatrician came in furious because she was supposed to be in the NICU and wasn't. At the same time I was having spinal headaches from the C-section, Joe was gone, I was in a lot of pain, and Nora was getting transferred to the NICU. She got transferred down and the pediatric neurosurgeon came in. Luckily it was a different one. This man sat down with me for around 30 minutes talking to me. He was absolutely incredible. To this day, he is still my favorite doctor. He calls and checks on Nora just randomly. He used to call me on the weekends to check on her, he is absolutely amazing. He told me that her images were actually looking a little bit better so we were going to hold off on her shunt. We also found out that she had two holes in her heart, which are thankfully now closed. We found out she was low tone and had clubfoot. However, our stay was only six days, and we were able to go home. That's when things kind of got, I don't want to say worse, but different in a bad way. So, eating was a struggle from the beginning. She still does have pretty severe reflux. We were having to feed her every two hours, and she still was taking an hour to eat anything. She wouldn't wake up, we would have to turn the lights down because it hurt her too bad to have the lights on. We lasted about six weeks, and then it got worse, which we didn't think was possible. She wasn't waking up at all and she wasn't eating at all, so we called the neurosurgeon and the next morning we went in and she had her first brain surgery to place her shunt.


Madeline Cheney  19:12 

And I remember, looking at your Instagram and seeing you talk about her shunt-aversary, her anniversary of getting her shunt, and you mentioned that she really woke up after that surgery.


Karley Henderson  19:26 

Yes, the relief of the pressure, and her eyes were so big after her surgery. She smiled for the first time, and we felt like we were meeting her for the first time, we felt like we were finally getting to meet Nora. It, to this day, is still my favorite memory. Addie got to come in because it was pre-COVID, and even she, a two-year-old, was like, "Her eyes! Her eyes! Mommy, her eyes are open!!" It was just incredible because shunts fail quite often, but it also saved her life.


Madeline Cheney  20:10 

Wow, I bet that was so amazing, and I think that's fairly common among our community of parents. They take the baby after they're born and place them on your chest, and that's when you actually get to see them and meet them. I think that that moment occurs at other times for a lot of parents because of different medical stuff going on. Like, hearing that story reminds me of when Kimball, and apparently this was an error but the doctor said he didn't need his collar anymore, so we got to take off this big plastic collar and held him for the first time without a collar. It kind of seems like a similar moment to when Nora got her shunt. I think that moment where you feel like you really meet your child for the first time can happen at different times.


Karley Henderson  21:15 

Yeah, I agree. I think it's incredible. Just like with your experience and with Nora's shunt. Looking back, I actually have a hard time looking at her pictures because I can see just how much pain she was in. Honestly I feel a little guilty that she didn't get her shunt sooner, but, going back to that memory, it was like her birth again. There was Nora, happy and smiling, and her eyes. I didn't know what color her eyes were. It's amazing. It's sad and it's amazing.


Madeline Cheney  21:57 

Yeah. I always think of Inside Out, when they have the memories that are touched by Joy and Sadness, I feel like those kinds of memories definitely feel like that because it was so happy but so sad knowing that that's how it happened, but it was still so happy.


Karley Henderson  22:18 

For sure. My infant had all these incisions on her head, however, she's looking at me with her eyes open, smiling. It's definitely a mix.


Madeline Cheney  22:29 

Yeah. And you can appreciate it so much more. When it was a procedure that got her there, you don't take that for granted at all, being able to see her eyes or interact with her.


Karley Henderson  22:41 

Yes, exactly. And she hasn't stopped smiling since.


Madeline Cheney  22:45 

That's so sweet. Well, I guess, fast forwarding, you've mentioned that Nora has 13 specialists, is that right?


Karley Henderson  23:02 

She has around 14 doctors and three therapists.


Madeline Cheney  23:06 

Okay. So appointment day is almost every day, right? You probably have so many appointments, let's talk about that. What is that like for you? Not just logistically, but on an emotional level. Appointment days are so tiring to me, and picturing doing that almost every day is baffling. So how do you handle that? What is that like?


Karley Henderson  23:33 

With that many doctors and that many therapists, and not to mention how Addie also has three therapists and her doctor, I feel like whenever we have a busy week, which is almost every week, I go into what I call 'Appointment Mode' and I feel like I get these little blinders on. I grab my pen, my notebook, and I put my blinders on, and that becomes our focus. Nothing else matters at that moment. We go in and we get it done, but at the end of the day, I'm exhausted. Honestly, I feel a little sad and a little jealous of other kids. I saw a meme the other day that was like, "You're taking your kid to soccer practice and I'm taking my kid to an appointment." It's hard because we spend so much time either in the car or at an actual appointment, so there's some days where they don't even get to play with their toys because we are literally gone all day. So, again, it's a mix of feelings.


Madeline Cheney  24:39 

Yeah, and we're not in the appointment phase as much anymore so it's not as often, but when Kimball was in more appointments, not as many as your girls, it felt a little bit like being on the outside looking in. Like pressing up your noses like, "Wow, they just live. They're just playing and going to preschool," and here we are shuttling back and forth and being a doctor mom.


Karley Henderson  25:14 

Yeah, it's hard. It's taken me about three years, since Nora is three, to remind myself that, just because their problems are not big to me, they still have problems that are big to them. I have to remind myself of that because I do have that tiny bit of jealousy that they do get to just do whatever they want that day. I have to remind myself that whenever I get to that point.


Madeline Cheney  25:46 

Oh, that's such a good point because it's not only the great equalizer to be like, "Oh, like, it's not like they're free of problems. It's just not as obvious to me." But at the same time it's also really unifying where it can feel more isolating. That could kind of counter that, to be like, "Well, they have issues too. They're also grappling with things I don't know about. We're all figuring stuff out right now."


Karley Henderson  26:14 

Exactly. It might be something big to them, whereas I might look at that situation and wished that I had something so little. I feel like it's all of our different perspectives on our life at the moment and what we have been through.


Madeline Cheney  26:30 

Yes. It is so relevant to what you've been through. And even maybe different phases of life, like there might be more difficult stages and there might certain things that used to really bother me that don't really bother me as much anymore, and then it becomes an easier phase. And so I'm getting ticked about things that might not actually be a problem.


Karley Henderson  26:53 

Exactly. Nora's longest hospital stay was about 30 days, and I know people with kids who have never been in the hospital, I know people whose kids have been in there longer. It's all about the different parts of our lives.


Madeline Cheney  27:13 

So, what do you do? And this is not like a quiz. Like, "We're gonna rate you on how healthy your coping skills are." I'm just curious, after most days, but specifically after appointment days, how do you decompres after putting all that energy into putting the blinders on and getting everything done? What do you do at the end of the day?


Karley Henderson  27:36 

Honestly, I curl up on the couch, put on my show, and most likely fall asleep on the couch,because I am just mentally and physically exhausted. I don't want to be touched by anybody or anything, I want to just lay there by myself in the quiet and watch my show with my blanket.


Madeline Cheney  27:57 

Yeah, totally. I feel like that is how I always feel after appointment days. It's just a lot too, with appointments. It's not just the logistics of getting there and being there, and that can be a lot too, but just the emotional toll and problem solving with the doctors, as well as maybe being triggered back to past appointments that were really difficult.


Karley Henderson  28:27 

Yes, it is a lot and, like you said, it's so much more than just physically getting there. Nora has a lot of diagnoses linked to genetic, which is the Loey Dietz Syndrome and the Osteopathia Striata with Craniel Sclerosis (OSCS). Those cause so many other diagnoses, and finding out how they correlate together, and both of her genetic conditions are very rare, so then we deal with the doctors sometimes not knowing, and then we have to problem-solve even more. They're like, "Well, normally you do this." Well, Nora does not do normal. Then problem solving, figuring out a plan, scheduling tests, scheduling the next appointment, there's so much that goes into one single appointment, let alone when you have 10 in one week.


Madeline Cheney  29:29 

Yeah, and you're the coordinator. That's something that really baffled me. The beginning of all this was like, "Wait, I'm the middleman... why am I the middleman?! I don't know any of this stuff!" So to be in a GI appointment and talking about something like, "Well, but what about this and this specialty," and they'll be like, "Oh, can you ask them about this and this." It's a lot to just be the middleman.


Karley Henderson  29:57 

Yes, it really is. It's actually funny you say that because there has been around three doctors who have told me how because of Nora, they communicate with other specialists now that they did not before. Like, while I'm very glad you are communicating, I'm still questioning why you never did before.


Madeline Cheney  30:18 

Yeah, that's really funny. Like, "Yeah, that's what we're here for. We're gonna get you connected to everyone, throw a little mixer here." Well, I would love to wrap up with a quote that you mentioned previously. On Instagram, you wrote, "Like wild flowers, you must allow yourself to grow in all the places people thought you never would." I would love for you to share what kind of growth and changes that you've noticed in yourself because of this journey with your daughters and this type of lifestyle.


Karley Henderson  31:03 

I'm not the same person I was, at all, which, I know most people aren't when they become moms, everybody changes to some extent, but I don't even recognize who I was before. With us, and with medically complex children, you change even more. People complain about changing, but I honestly think we're supposed to change in the different stages of our life. I don't think the old me will be surviving this. Nora has taught us so much, she has showed me how to be strong, and what strength really is, she started sitting and crawling with a chest tube, she is the definition of strong. As cliche as it is, she's taught us to not take time for granted because we don't know if we're going to end up back in the hospital, or if something worse is going to happen. So we don't take it for granted, we celebrate every tiny victory. She runs away from me, and instead of getting mad, I secretly celebrate it because she's running. She's showed me that I have a voice. She showed me how to advocate for her and for her sister, Addie. I make sure that my voice gets heard because it's what gets her and Addie the care that they need. I don't step down, whereas before I might have. She has changed our entire family and has just showed us so much.


Madeline Cheney  32:39 

I love that, that resonates so much. I think you're right. Where people are like, "Oh, I don't want to change." And I think it's painful. It's really painful to go through the things that do change you, but you're right, you need to adapt to be able to be capable of what you're doing right now.


Karley Henderson  32:57 

I think for everybody, you're not going to be the same person you were five years ago, whether you go through something traumatizing or not. It's inevitable and it is sometimes for the better, to be able to cope, to be able to support and be there for your family and for yourself.


Madeline Cheney  33:16 

Yes, absolutely. Well, what would you say to parents that are just starting out on this journey and are probably undergoing change, that really painful stage of it, and it's not like, "Wow, I'm changing. This is so cool." But in that really painful stage of change that they'll realize later was really meanignful. What would you like to say to them, that might be listening right now?


Karley Henderson  33:47 

I would tell them that it is worth it, and your body and mind are doing what they have to do to survive. That they're not alone, no matter how lonely it feels, and, as hard as it is, it's easier to accept it and to go with the change instead of fighting it.


Madeline Cheney  34:11 

Very wise. All right. I echo that, Amen. Thank you so much, Karley, I really appreciate your vulnerability in sharing with us today.


Karley Henderson  34:23 

Thank you so much.


Madeline Cheney  34:25 

For adorable photos of Karley and her family, check out the website The Rare Life Podcast.com. You can also find links in the show notes to follow Karley and me on Instagram. Also, if you haven't yet, be sure to check out our Appointment Day merch, which includes sweatshirts and T-shirts designed for you to wear to appointments. My hope is that they can give you just a touch of empowerment and the reminder that you are not alone. There are so many of us, like Karley, that are soldiering through endless appointments with our children too. They come in a women's, men's, kid's, and baby sizes, so your whole family can match, which is pretty stinking cute if you ask me. There is a link in the show notes for that. I will add that all proceeds go towards supporting the podcast, so it's a win-win. Join Karley and me next week as we dig into her mental health as a Medical Mom. Karley has always struggled with anxiety, but since traumatic events with Nora, she now deals with night terrors, depression, and panic attacks on top of her anxiety. I know this is a common tale, so I cannot wait for you to listen and know to your core that you are not alone. See you then.

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