Ep. 101: Tiffany’s Story | T18 + Advocating for Her Daughter’s Right to Live

 

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Summary

When Tiffany was told her unborn daughter was “incompatible with life” because of her trisomy 18 diagnosis, she was immediately pressured to terminate. After deciding to continue her pregnancy, Aiyana was born alive—beating the odds. And because of the T18 diagnosis, doctors refused to give her the life-saving procedures she needed. Tiffany then changed her care, in favor of a doctor who agreed to give her the procedure and save her life.

In this episode, Tiffany tells what its been like to have to fight for her daughter to receive needed medical care. She also shares what it was like to go through a divorce in the weeks leading up to and following Aiyana’s chaotic birth, and ways she has learned to surrender the illusion of control.

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Episode Transcript

Tiffany Pasilles  0:00 

“But back then it really was constantly trying to prove that she was worthy of life and why. And constantly trying to contradict what they were taught in medical school or nursing school about my daughter.”

 

Madeline Cheney  0:15 

Hey, you're listening to The Rare Life. I'm your host Madeline Cheney and I am so excited to share with you episode 101, with mom Tiffany Posse is Tiffany's second daughter Ayana, who is now four was diagnosed with trisomy 18 in utero. And because that rare condition is widely taught in the medical world to be and I quote, incompatible with life. The pressure to terminate was immediate and constant during the remainder of her pregnancy. And once she was born, which was beating all odds, the battle to prove Ayana was worth fighting for was far from over. Tiffany continually fought with doctors to give her daughter the life saving care she needed despite her diagnosis of T18. In this episode, she shares with us what that has been like for her and ways that she has evolved throughout the process. A huge aspect of keeping Ayana stable has been finding a food that she would tolerate, which as many of us know isn't usually a simple task. As it turned out blends of real whole foods were the answer. Tiffany uses and loves products made by an incredible company called Functional Formularies. Tiffany said, "I use functional formularies because my daughter couldn't tolerate any other food, their product nourish has been a real game changer for her. It's helped her grow so big and strong. Thank you functional formularies."

 

Now, let me tell you the genius of functional formularies. As parents of children with medical complexities, we are busy. So busy. Not just physically doing all the things, but mentally and emotionally there is just so much. So the idea of prepping blends of real, whole foods to give our to fed children it can be utterly overwhelming and just not realistic. And for those of you who don't know, the process often consists of prepping food and then blending it into a puree that can be used in lieu of traditional formulas in a bottle.

 

But did you know that there can be some incredible health benefits? One study conducted by Boston Children’s Hospital about the effects of children that were fed with a blenderized diet showed a decrease in hospitalizations, and GI issues, which is just incredible. And there are many families out there that give their children homemade blends. But what if that just isn't something you can or want to do. But you still want the health benefits for your child. That is where functional formularies comes in. They create shelf stable blends of real food matching the convenience of traditional formulas. Not only that, but they use 18...18 high quality organic plant based ingredients, each one selected with a nutritional benefit in mind. And I don't know about you. But if I were doing my own blends, they would be nothing close to that. Nothing close to that. So do you want to give Functional Formularies ago, of course you do. Here are some ways you can try it out and see if your child benefits from making that switch before going to the ropes with insurance to convince them to cover it. Option number one: you can ask your child's clinician to request a free sample from functional formularies. There is a link in the show notes for them to do that. Option number two: you can go ahead and buy some and get 10% off your purchase by using the code Rare10 at checkout, which is exclusive for listeners of the real life. And option three, you can enter our giveaways on social media. This weekend, we're giving away products to three lucky winners on Instagram. And then next weekend. We'll do the same on Facebook. You guys this stuff is so great. It's helped so many people and I encourage you to try it out to see if it is something that can help your child thrive. Check out the show notes for links to do all the things and to learn more about functional formularies. And a huge thank you to them for sponsoring this important episode.

 

Okay, I'll tell you a bit more about Tiffany and then we'll dive right in. I promise. Tiffany and her two daughters Leilani, who is five and Ayana, who is four, currently live in Tucson, Arizona. Tiffany used to own a successful communications company. And you'll hear a little bit more about why that ended in the episode. She is a lover of reading and writing, and tea but not coffee. All right, let's dig in. Hi, Tiffany. Welcome to the show.

 

Tiffany Pasilles  5:19 

 Yeah, thanks for having me.

 

Madeline Cheney  5:21 

Yeah, I'm really excited to talk about your story, you have a lot to share. And I feel like it's important, like, for you to have a voice and for us to talk about these type of things. So I would love to just dig right in and hear about when you first found out the Ayana had any kind of medical issues, and I believe you had an actual diagnosis prenatally, right? You knew that what she had?

 

Tiffany Pasilles  5:45 

Yeah, so it happens in kind of multiple phases. So when I was married, I'm no longer married anymore. But when I was married, this was our second living child. I had had a couple of miscarriages before my first child. And we actually weren't really confident in whether we were even going to be able to get pregnant when we were trying with Aiyana. We were really concerned about that. But for whatever reason, it happened really quickly, actually, almost to the point where it made me nervous. And almost immediately from the beginning of the pregnancy, I was bleeding pretty heavily. And so we started, you know, the prenatal services, like right away. And from the very first appointment, it was, well, it looks like you're going to miscarry, we're just going to wait and go week to week and every single week we went in and every week, it was the same thing. You're gonna miscarry, we're just waiting for this. So that went on for the first 13 weeks. And then...

 

Madeline Cheney  6:52 

I'm gonna interject I don't know if you know, it's like I've had five miscarriages, so I can just picture that like, for 13 weeks to be on the edge of like, when's it gonna happen? Holy cow.

 

Tiffany Pasilles  7:03 

The whole pregnancy was really torturous. And like the way the diagnosis fit into it was really, really brutal. Because it was not this quick thing that you would like imagine it to be where you go to an ultrasound, and they find something that it wasn't like that at all, it was the most drawn out process and really required so much waiting in limbo, like, uncertainty was just the name of the game. And I mean, it still is to a degree. So at 13 weeks that concern me like older age at that point. So they're like you're taken NIPT test. I didn't know anything about this. In hindsight, I don't think I would have done the NIPT tests, because I actually feel like it created the stress of the situation, the drawn out process. And the bleeding had stopped. So we had one week between that time where I was like, we were so happy, it was the happiest we had been in so long, like just really cherishing the pregnancy. We had announced it to our friends and family like it was just it was that moment like where you finally accept your pregnancy. NIPT tests came back like 14 or 15 weeks, and it came back high risk for trisomy 18. And, one, I have no idea what that is. Zero. I didn't even have experience with any sort of disability prior to this at all, either had my ex husband, her husband at the time. But I will never forget that conversation in the office with the midwife and her pain of having to tell us and, just, it's what you see in a movie, when they tell you something and you just like break down crying and I literally was looking around and like people are talking. I couldn't hear anything. I couldn't even focus. And I was just so beside myself because I didn't know what this was. And he just went internal. He shut down on more of the like, communicator, let's press into conflict. Let's move through things. He's more than less peacekeeper, let's shy away, let's avoid conflict. Let's not talk about these things. So we each had our very, very specific ways immediately that came out in that room. And I remember we had our daughter Leilani with us and she was just barely one. And she was on our lap. And we were bawling. And I remember she just grabbed my hand start crying already. And she just looked at me and she like knew how upset we were. And it was just a horrible, horrible moment. And I think every single family that has a diagnosis, I mean, it's just earth shattering, you know, and you're trying to make peace with that. And so we left that office with almost no understanding of what this was. And she had zero experience with anyone who had lived with it.

 

So the message as kinda she was trying to tell it to me, because she did deliver my other child and she was very pro choice, very supportive. And she's like, I will help you do whatever you want do with this. But you need to also have some time to process this too. But she didn't know anybody that lived it. She's like, I'm honest, I don't I don't know anybody who's living with this. I've only heard that kids die. And she said, to be really honest, because I said, "what are the statistics? Like, what is the literature say on this?" And she's like, "statistically, we've been told that 85% will not even make it to birth." And so she said, the expectation is that you will probably have a stillbirth. That was the immediate expectation. And if your child is born alive, they will live till two weeks. If, for some chance, your child lives beyond that, she said, then that is so rare, she's like, it's less than 10% of those who lived two weeks that live to their first birthday. So this felt like a just complete death sentence in a sentence. And we get into the car, and we're driving home. And immediately I started Googling, like, every single mother.

 

We should remember!

 

Oh, yeah, terrible, horrible that the images that came up, it was like the most extreme deformities, really staggering death statistics. I mean, it just painted the most dismal picture. And so in those few weeks afterwards, we took a couple of weeks to digest. But immediately on that way home, we had started fighting. And we really had different feelings about how do we progress forward with this. I mean, respectfully, so there's a baby inside my body, and there's not one inside of his. So I think that's a hard thing to make sense of when you don't even have a physical connection yet. And we had started fighting about termination, because that's what was given as an option. She's like, in Texas, where we were living at the time, that was not legal after a certain number of weeks. And she's like, so if you do decide that, I mean, you would have to do it like right now, legally, you're already at the...

 

And I was like, I'm not even ready to make that decision. And she's like, so your other option would be to go out to a different state. And she's like, of course, I will help you in whatever way if that's what you choose to do. But you would have to do it in a different state, because Texas will not allow that. And she said, if you want to continue the pregnancy, she's like, of course, I will care for you. But I would like you to also see an MFM. So she referred us out to an MFM locally, who was horrendous, she made the situation even worse, she had this just be positive attitude. Let's just just be positive about it. Let's just wait and see what happens. And I was like, no.

 

Madeline Cheney  12:44 

Do you see the statistics, like?

 

Tiffany Pasilles  12:46  

I don't wanna do that. This is horrible

 

So eventually, him and I going back and forth. He wanted me to terminate. Point blank. He wanted me to terminate. I did not. But I also felt like his reasons for terminating were really reasonable. He was really concerned about the suffering element with the limited information that we had, you would assume that if you brought a baby like that into the life that they really would be struggling, and it would be a selfish reason. That's initially what the perception was of that. And so I gave it another week. And she said, Well, it's 16 weeks, you can do your amniocentesis, and that'll give you some time to figure out what you're doing. So we did the amniocentesis, it was not going to come back till 20 weeks, because they sent it to a different state for testing. There was a mistake that happened. So we now had to wait an additional month to even find out with 100% certainty. Because my concern was, what if this NIPT is wrong?

 

Madeline Cheney  13:49 

Yeah.

 

Tiffany Pasilles  13:50 

And I go and terminate a child based on that, which I mean, abortion, I'm just gonna call it what it is. It's not just termination. And so him and I were really arguing and distant during that time period. And, like, in an agonizing pain, waiting for this, it just was so brutal.

 

Madeline Cheney  14:07 

Yeah.

 

Tiffany Pasilles  14:08 

But somewhere around I want to say like the 17th or 18th week, I just felt like, I had to go inward and really focus on my baby, like, and so I really started getting back in touch with my body and feeling. What is she doing right now? I mean, I didn't know she was a girl yet, but what is she doing right now? And what I felt was a baby kickboxing me like there was such a strength and like she was moving. And I was told that these babies don't move. They you shouldn't even be feeling her. And so right away, I felt this energy and strength. And I was like, but my baby's not doing what you're telling me is typical to this diagnosis.

 

Madeline Cheney  14:50 

Yeah. Well, I just feel for you like picturing those weeks leading up to that point, because it was so unlikely statistically for her to live past the two weeks right. So I imagine that you were like, "hey, how do we make a decision of like, choosing between different versions of hell, right? Terminate now or lose her naturally now, or later, once I've gotten, like, even more attached to her, or after she's been born, and I'm that much more attached to her and watching her suffer." And so like I feel for you because those are hellish options. And none of them are easy. None of them are simple or like, oh, we'll just do this, right. And so I think that is just agonizing. Like you said,

 

Tiffany Pasilles  15:30 

No parent should have to make a decision like that. And so I have so much, so much, so much empathy for newly diagnosed parents. Because it's, every single one of us knows, it's just health, it is your worst nightmare. And there's nothing you can do about it, you have to just move through it. It's completely out of your control every element of it. And part of that is so much of like, why are we making that decision? Is this about me? Is it my selfish desire to hold my child? Or am I sparing her pain by doing the termination abortion? It just flips everything that you had ever thought about on its head? And you're sitting there with like your head spinning? Like I don't know what I believe in anymore?

 

Madeline Cheney  16:15 

Yeah, like I remember very, I mean, I have an episode with I don't know if you've heard it with a palliative care, Orely Bills, like where we talk about just that whole, like, oh, my gosh, like, what is more selfless and loving for your child? Is it letting them go sooner and not having them suffer? Is it fighting for them in air quotes? Like, what is more loving and more selfless? Because it really does make you question everything.

 

Tiffany Pasilles  16:37 

Yeah.

 

Madeline Cheney  16:38 

Once you're faced with that, you're like, holy cow. What an ethical like, scenario of like, no one even really does know the right choice. And no one else can make that decision. But you

 

Tiffany Pasilles  16:49 

Cause there is no right choice, because it's different for every person. And I see that in our diagnosis community every day, I see parents who choose a whole spectrum of decisions. And it's like, they'll say, Well, what do I do? You know, and these questions, and I just reply, you have to listen to yourself and do what you can live with. Like, that's what I say you need to be able to look at yourself in the mirror, and not have regrets and feel good about the decision you made as good as you can. Because any decision you make is just there's going to be really hard stuff that comes with it, no matter what.

 

Madeline Cheney  17:23 

like endless what ifs, like, what if I had done this other option? I'm sure that is something that comes up a lot probably have to work on not getting so wrapped up in that of like, what if I'd done this differently? And it was that the right decision? And yeah, oh my gosh.

 

Tiffany Pasilles  17:38 

Making decisions with the information you have at the time, it really like staying present with that. Because otherwise, I mean, you could spin yourself into the ground with that anywhere, you could go with it. And it's also hard when you and your spouse are not on the same page. Because at one point, before I had really made the decision for myself what I wanted, I actually was kind of like line teetering with it. I was like, Well, I see what he's saying, I see the midwife telling I have all this evidence of these people telling me what I should do, quote unquote, should, in this feeling, this gut feeling that is like the complete opposite direction. And that feels really scary when everybody around you like even my family, my grandmother, my extended family, everybody knew what they were doing. They asked me, I think that's probably the best thing to do for the baby, that you should terminate. And that was surprising to me to see how many people around me just accepted that. And I didn't have actually a single person until I'd actually been more public about my decision that had come forth and been like, well really, you know, maybe you should feel this out. Or maybe you should think about it this way. Everyone was just immediately on board with whatever the midwife said. And that's part of I think the hard levity of this too is when your medical professional is telling, recommending something to you. Everybody gets on board with that, because that's something you trust before situation like this. And then once you get into this type of lifestyle, my trust for that is very limited. If I'm honest. And now how many years in we are I have very little trust because it's just such a unique situation and they don't have experience with it. So how on earth can I trust that what you're telling me is correct for my unique child?

 

Madeline Cheney  19:32 

Totally. Yeah, like this is definitely like I feel like a moment in time that every parent of a child with a disability comes to where it's like this big realization of like, oh, yeah, doctors and nurses and all these people, they're human. This time. It was the first time for me I had never gone against like a doctor in the past and I had never assumed that they didn't know everything that they're talking about.

 

Tiffany Pasilles  19:57 

I mean, that'd be so nice.

 

They were told they know everything right? That's what you assumegoing into this. I really trusted that. And I now know the opposite. But yeah, so at 20 weeks, I told him what I wanted about the week before. And he eventually came to the settling of if that's what you want to do, I will support you. So we kind of had come back together, we had chosen a name. Her name we chose was Ayana. And there was a reason for that. And then we got the call to come in for the amnio results. And I really my gut already knew it was confirmed. But when we got in there, she said, Yes, it's confirmed. And what are you wanting to do, and I told her, I want to move forward with the pregnancy. And I told her about the experience with MFM. And I was like, I'm not going back there. Can't make me and I was already starting to protest. So she actually reached out to some colleagues that she had at a university, in some recommendations came back for a genetic counselor up in San Antonio. So we were living in the Rio Grande Valley at the time, which is down along the border of Texas and Mexico. And the medical care there is severely behind. It's not innovative, like you should not have surgeries down there for anything that requires any type of technique or skill, really, really big skills.

 

And I experienced that medical care in person after her birth as well. So immediately, she referred me up to San Antonio, because we felt like prenatally that was going to be the best situation for us a bigger city, more experience, maybe a different mindset. And initially, that was the experience that we had. And so that was four hours from where we live. So I drove that round trip every almost every week with my daughter Leilani in tow. And my husband at the time would be coming up as we did stuff. And eventually we got to the point in the pregnancy where they felt uncomfortable with the distance, getting closer and closer. They're monitoring like the core Doppler core pulsations and all of the things. And when we did the anatomy, scan with them, I will touch on that she really wasn't presenting with a lot of the stuff that they expected. And so this has been a running theme with Ayana. Doctors see her even from prenatally during that first anatomy ultrasound, and they're just like, I know she has this diagnosis. But I'm not seeing the picture that I've been told from a textbook that I shouldn't be seeing. And she was just very active, like she never wanted to be seen on the ultrasound. It was so curious. And really I loved it because I'm like, That's show of strength, you know. And she looked very typical. She looked like a typical baby. During the ultrasounds we didn't see any issues with other organs, her feet, her hand. Her hands will be clenched. Sometimes Sometimes they were open. A clenched fist is like a very typical sign if you read like literature. And then her heart showed some things, but we couldn't really get a clear enough picture to know perfectly. And what they did diagnose ended up being completely false after birth.

 

Madeline Cheney  23:21 

Oh, wow

 

Tiffany Pasilles  23:21 

Yeah. So everything they kind of showed me on the ultrasound while we agonized over it in every appointment really wasn't an issue after birth, it was stuff that they actually didn't find on the anatomy that ended up being issues after birth. So that's been another part of this thing that I've realized afterwards is that the ultrasounds are really not as reliable as we all think they are, and they really can't see as clearly. And so the information that we are given, I've now learned we take with a grain of sand, like you really can't leverage everything on it and focus on it and let it just unravel you because there is a chance that it's completely false, or they're only seeing a part of it, or they're not catching other huge things that will end up being really major parts of your medical journey later. And so we did that back and forth, back and forth. And then when we got to the point where they wanted me up there, they wanted me to move into the Ronald McDonald House and I was going to move in with my daughter. And my husband at the time was there still working. He was going to come up for the birth. That was the original plan. I packed us up we did our goodbyes, we drove up there. I got into the Ronald Mcdonald house unpacked. And the first night after we got in that next morning, the Ronald McDonald house manager came to me and said, You're not allowed to even be in this house. And she asked me to leave. And I asked why and it was like some sort of admin issue in terms of they wanted me a specific number of weeks. You had to be basically like within a week or two of labor, and we didn't know when I was gonna go into labor. That was the problem. The risk was that I could go into labor early. So we went back and forth, the doctors got involved trying to get them to support and ultimately, no, I had to pack everything up and drive all the way back.

 

Madeline Cheney  25:16 

Oh, my gosh, and how far along were you at that point?

 

Tiffany Pasilles  25:20 

I think I was like 28.

 

Every week was really hard every week was so much. So I met with my midwife again, and we regrouped. And we're like, "okay, so we're going to have to have birth here, potentially. But then we could Air flight out to San Antonio. San Antonio Children's was on board with the Air flight." I mean, it was so stressful was so stressful.

 

Madeline Cheney  25:49 

Okay, so like, just to clarify, so they sent you back home knowing that you could go into labor anytime, four hours away from the care you needed. For a child that was like statistically, so at odds with even surviving, and they sent you back to where healthcare was like trash.

 

Tiffany Pasilles  26:05 

Yeah. That was literally the sentence I said to them, was like...

 

Madeline Cheney  26:11 

Okay, this is like, are those times like, what was going on?

 

Tiffany Pasilles  26:15 

And that's when I learned that the Ronald McDonald house isn't like a chain. There's no consistency, each one is owned individually. And they really can make up their own rules, because we've had other Ronald McDonald experiences that were amazing, wonderful.

 

Madeline Cheney  26:30 

Okay.

 

Tiffany Pasilles  26:30 

That was hard. That was a really hard, unnecessary blow, and it really defeated me, I came out of that, like, my baby's gonna die, we're gonna die in the valley. That's what I thought. And I felt like this is out of my hands. I can't even control this at this point. And I have faith in Jesus. And I was really at that point, leaning into that, and just trying to trust that if this was what was supposed to happen, that that is her story. And that is okay. And I can't control all of these things. I have to let some of this stuff go.

 

And so that's what I did. I let it go. I met with our midwife, we made a plan with the local hospital, I went in and met with the neonatologist and all of the staff. And we put together like a basic plan.

 

Madeline Cheney  27:16 

Which I like going back to what you said about letting go of control. I feel like and we mentioned this when we're on the phone the other day, that surrender of control. I mean, can we talk about that for a second? Because I feel like that does make a huge difference, right? It sounds so like doomsday to be like what you let go? Like you gave up? But I feel like there's such a big difference between giving up and letting go of trying to control things that you have no control over.

 

Tiffany Pasilles  27:43 

Yeah. Because in a way, I mean, I could have just spun myself around and around around with this, and made myself sick. And that would have hurt my pregnancy even more. I mean, I wouldn't have gotten anywhere. It was such like a survival. I mean, I still had another child, she was just over one years old, she needed me every single day, I didn't have the luxury of checking out on this. And for me control is the issue. I want to control things. And so I really was trying to practice getting back into my body reconnecting and trying to release that control. Because in the end, it actually hurts me more than it helps. And with this situation, I actually felt personally convicted on this. Like, I felt like this was something I was supposed to really come to terms with during this process was my control issues, and really trying to lean into the uncertainty of it, the pain of it, the brutal parts of it, that things that were so wildly out of control. I mean, every single week, something would happen, that I couldn't even fixed it or stopped it if I tried. I mean just things kept happening every single week. And at one point I actually sat myself down and was just like, "do you not see the wave of uncertainty and out of control things that are happening here?" Like you at some point, you got to unclench your fists and just let this be, and just ride this a little bit. And there's moments where I'll feel a prompting and I'll be like, "okay, yes, I'm supposed to step in here. I'm supposed to intervene. I'm supposed to push harder. I'm supposed to advocate", whatever it is. But in the end, I felt like that Ronald McDonald House moment was actually like a huge door closing. And doors had been closing leading up to that too. And I felt like a complete stoppage almost in a sense, if that makes any sense at all. I just felt almost like a timeout. I needed to take a timeout and that's what I did. I went home I like licked my wounds from that experience. And I just sat there and I did a lot of stillness, a lot of just trying to be and take care of my child and just have normal moments for like a week or two while these doctors were scurrying around trying to figure out what are we going to do with this child that is coming like any week. You know, because the fear was, I mean, everyone was like, You're gonna deliver early, they were so certain about it. And I had did not deliver early with my first either. So I just had no experience with that either. So I waited, and we met and we talked, and I actually felt a lot of peace. After that, like week, week and a half of just kind of being. And then when I had the conversation with the hospital, I felt like, "okay, I've done everything I can". Like, there's literally nothing else I can do here besides me, packing this up and moving as cross country or something crazy, which is not even humanly possible. At that point, I was having a lot of preterm labor, because I was in and out of the hospital with these preterm labor contractions. And at that point, my husband at the time, and I were unraveling, there was so much distance. He was sleeping in a different room, completely shut down to me, I would like to try to talk and ask questions or physical touch, just none of it. None of it was happening. We were completely disconnected. I felt like the whole pregnancy, I couldn't talk to him about what I was feeling. Because he was so internalized, and I could see he would be sitting there and I could literally feel what was going on in his head. He was just ruminating on this. And like, in his own degree of suffering, he was in a lot of pain about this. I don't know that he knew what to make sense of it with. And I didn't know what to do. We tried counseling and those things, but nothing positive was happening. But him leaving, I did not expect to happen, the timing of it, I did not expect to happen. And it really, it just compounded everything even worse.

 

So at that point, I was 32 weeks pregnant with her and like going to court to get separation orders and like trying to navigate visitation and co-parenting now. And planning for birth and all, it was just a lot, a lot, a lot a lot. And I was losing everything. My whole world was literally imploding at the same time. And there was nothing I could do about it was just a complete loss of control in every area. So at that point, it was just me and Leilani going into the birth, I went into birth at exactly 39 weeks. We induced, because it was a good week. So you made it, you made it fold her spected it. It's like spraying friends and everybody into action. Someone took Leilani and I went into the hospital. I had a lot of fear around that because of the care there. I did not feel like they knew what to do with a child like her. So I delivered it the only hospital that had a NICU there. It was not the level of care that we needed. The whole plan was to basically get transferred to San Antonio's NICU. But the doctors at McAllen ended up fighting me. Insurance is fighting me like. It was my first entry into advocacy. And I had never had to deal with anything like this before and really was caught off guard. That is where I put a lot of trust in my community. And they're the ones who really guided me at that point.

 

Madeline Cheney  33:17 

Because with Trisomy 18, because it's considered in the medical world as non compatible with life. That's why you've had to advocate so fiercely right? Because I think like a lot of us. Yeah, we need to advocate. But in that world, they're like, "well, why treat because she's gonna pass away" is that kind of how it...?

 

Tiffany Pasilles  33:35 

The neonatologist during her birth literally said that he's like, what's the point she's going to die? And I overheard that in labor, just over and over. And a lot of parents will hear this is just that, "Oh, do you need to accept this, these babies die, and there's nothing we can do for you." But there is there is actually things you can do, whether it's comfort care, or whether it's actual interventions or surgeries, there is actually things we can do. And that's what I wanted.

 

Madeline Cheney  34:02 

And the community that you found were the ones who were like, Hey, you can actually do something about this. And here's what you should do.

 

Tiffany Pasilles  34:06 

Yeah, these kids were living and they're like, oh, yeah, my son or daughter had that issue. And this is what we did. And I'm like, Okay, well, then I'll ask for that. And then when I do that, I met with resistance. And that was ongoing throughout our journey, and to a degree still is there today. I will say we are in a very different place now because she is older. It's almost like they can pull that anymore. It's more like wonder and amazement about her now, but back then it really was constantly trying to prove that she was worthy of life and why and constantly trying to contradict what they were taught in medical school or nursing school about my daughter, which is that their vegetables. They don't live. The statistics are terrifying about these kids. But the problem with that and what I've learned is the statistics are outdated. So we're going off of outdated information and have kind of biased medical care going on, which then influences these kids dying and then feeds into those statistics.

 

So it's like, it did not rationally make sense to me. I'm like you see her take her at face value. Don't lump her in with everybody else because everyone's different. Yeah, like, look at her, she's making eye contact with you, you've never seen a Trisomy 18 child make eye contact with you. So maybe you should take that as "oh, she is really aware, she is making eye contact with me. She's crying, let's respond to her cries. She is having reflux, let's respond to her reflex." But it was not that straightforward at all. And it took me about two or three days to fight insurance and the doctors but I finally was able to get everyone to release everything. And so she took her first medical flight. She's a little frequent flyer, and she took her first medical flight to San Antonio NICU, and we were there for two months Leilani and my other daughter was in tow. So she's been with me this whole journey to ,and our two months at San Antonio NICU was complicated to say the least. I don't have great feelings about them. Now, I feel like it was kind of like a bait and switch, they seemed really, really supportive. But once we kind of got in there, it really turned into what is known as slow coding, essentially, is where they kind of tell you what you want. And then like the whole, let's wait and see. And no action ever happens. And so we almost lost her, she almost died about three or four times. And the fourth time was so bad that I like called a care conference with them. We had a lot of care conferences. And I feel like it was the moment I finally kind of stepped into my like mom of Ayana role. And I really put my foot down and was like, if you are not going to do what needs to happen for her because she needed heart surgery. She was in manage heart failure at that point. And I said, if you're not going to do that, then discharge us and I will go somewhere to someone who will. And they would never give like an answer either way. It was always like, "well, let's just get her to gain a little bit more weight. And then we'll kind of regroup and talk about it. "I'm like, "no, I want a definite answer." So I, during that time period, I sent her case over to a couple different places. I sent it to Phoenix Children's, which is ironically where our care is now. And they actually denied her right off the bat based on her diagnosis only. They hadn't even seen her case. And so at that point, San Antonio children's was not willing to do anything. So they discharged us home, she was five pounds on a feeding tube. And I mean, just the tiniest little thing. She was like purple, her arms were all bottled because her heart function was so bad. Dozens of medications. And I went home. And it was my first time kind of feeling like a single parent because I went home to an empty house. My husband, we were separated at that point. He was not there. So it's just me and the two girls and I had no nursing support. No nothing. And it was three weeks of some near death experiences with Aiyana. And just a lot of overwhelmed trying to manage two kids by myself with no support.

 

And it wasn't until we all actually caught illnesses like flu and colds all at the same time somehow. And thankfully, you know, it ended up being a real silver lining for her because she got admitted to our local hospital and they helped me get her to a doctor in Austin that I had been trying to get into from outpatient but could not achieve. My community had told me about this doctor from Texas Children's who had moved to a hospital in Austin. And he was a known cardiac thoracic surgeon and had worked on I think Trisomy 21, but also some 18 Kids a long time ago, like 25 years ago. So what that told me was that he had an acceptance, a longer, ingrained acceptance, and I really, really wanted to get her in front of him and see if he felt like she was a case for him because I felt like it was almost like my last shot. I had one other hospital in my back pocket that I would try after that if that didn't work. And so she took her second medical flight from McAllen to Austin, which was about seven hours north of us. I packed up our whole house again. Leilani and I we moved up to the Ronald McDonald house up there.

I had a really strong feeling that this was going to be a life or death situation like either this was going to save her life or I didn't know if we would be leaving that hospital with her. Yeah, she was in a really, really bad spot. And I felt like I don't know how much longer she could hold on without someone attending to her needs, surgically. And ended up when I met with him and he never even mentioned the diagnosis he was like I look at her heart is see something that is easily fixed, I'm going to fix that. And I was just, I like cried was he was so refreshing to hear someone just accept my daughter for who she was, and not like this label that had been slapped on her.

 

Madeline Cheney  40:15 

Well, it just sounds so traumatic to be taking your very sick baby to these people who are supposed to be saving her, and are like, she's not worth it. Like, fix my child, like save her.

 

Tiffany Pasilles  40:26 

They were waiting for her to die. It was like the conversations were always about that. Everything was, "well, when she dies, when she dies" I'm like, "she's right here and she's alive."

 

Madeline Cheney  40:37 

And you're the doctors like you're the ones who are supposed to be fighting for her. I think that that is so I don't even know what the word is. But it's just so sad to picture like the fact that this doctor said, okay, yes, I see that this is an easy fix. I'll do it. The fact that that was like this exceptional doctor, like that shouldn't be how it is. And I'm also thinking like, a lot of people listening have diagnoses more like Kimball's where it's like, no one's even heard of it. And that can have its own set of challenges. But at the same time, I'm like, but at least they don't have the bias against them, like you've had for your daughter because of Trisomy 18, having this reputation. And I don't know, I just think that that, you know, its own set of challenges right there that the fact that there's so bias against that.

 

Tiffany Pasilles  41:20 

You're like pushing a boulder up a hill from the very start, instead of it just being like a flat, even surface. Like it's just, you're up against a wall from the moment you get that diagnosis. And like a lot of parents will talk about the shift that happens in their care, the minute they received that diagnosis where everything was easy before and the minute you get that it's now you're on a completely different track. And oh, my gosh, it doesn't really go away. There's certain doctors I've met that are exceptional, and have gone above and beyond for her and have always supported her and they still do now. But there are so many doctors more than that, that we have experienced because I we now have been at multiple hospitals in multiple states, you know, I have a pretty wide experience. We were ones that had to travel a lot for care. We were not the people who just like had Trisomy Friendly Hospital next to us. And that's what we call it. We call it Trisomy Friendly or tries Trisomy Unriendly in terms of doctors and hospitals. And it's something our community discusses heavily is like, who is friendly to this issue that I need to get solved? And we really help each other crowdsource, what is the treatment plan? Like what has worked for our kids in the past? What hasn't? That's where these groups are so pivotal, and have helped me so much because I didn't know what to do about this. This is not a typical medical situation, there's things that she has issues with that I have never even heard of before. And she has multiple rare syndromes and disorders, not just T18 And so it's really for me always been a huge responsibility on my part to not only like connect with these parents and glean every ounce of information I can get from any parent who's willing to share, but also to read medical journals to educate and inform myself from a medical standpoint, to learn lingo, and be able to speak comfortably with these doctors, because I saw very, very quickly with these doctors. One, I'm a woman. Two, I'm Mexican, but also I think they just saw me as like, she should be still emotional and broken down right now. But she can't handle big decisions, I felt like that over and over and over was being placed on me. And I would have to literally say to them, "Look, I know that you are expecting me to not be able to handle this, but I can. So please trust me with speaking to me in a way that you would speak to anybody else." I said, "don't be afraid to talk in your lingo to me, I will write it down if I don't know what it is. And I will look it up later." But I said, "I need to know the full picture because I need to be involved in this and I am not going to be hands off about it."

And the more straightforward I was about that, and tried to like create rapport and trust with these doctors, the more I found that they would actually do that. And some of these doctors, I feel like we created a really strong bond, her complex care pediatrician and her cardiologist ,specifically in Austin, and like they have gone to bat for her life multiple times. And without them I don't think I would have ever been heard in the hospital setting. Because the parents in these situations can easily get kind of tucked away. And the doctors can kind of take over and do whatever they want. And when that happens, it's so dangerous sometimes because our kids just do stuff really, really different. Even medications, they metabolize certain medications quicker than other kids. But you wouldn't know that if you didn't actually have our kids.

 

Madeline Cheney  44:49 

And that way you know a lot of us rare parents like you do become the expert on your child's diagnosis because you're able to, and you take the time, to educate yourself from other parents who have expirienced with the diagnoses. And the doctors don't necessarily have the time or I don't know, maybe they don't understand how you could even do that of asking like these people living with these experiences. Because you know, like, in our case, there's like one medical paper. And it doesn't include a bunch of like main side effects of the diagnosis because it didn't help no research. But like, found out from other parents, I found in a Facebook group and so valuable.

 

Tiffany Pasilles  45:25 

Parents know best. They really do. They know so much more. Like I've had doctors even say like, you guys really do know more than we do. And there's some doctors who really are like, you're the expert, you literally are the one with your kid every day. It's a really interesting dynamic in all of this. So at that point, like we had Dr. Fraiser signed on, and a nurse actually said to be like, I hope you have no plans of going home anytime soon. And I was like, "oh, yeah, no, I assumed we'd be here for maybe four months." She's like, "no, I think it's going to be much longer." And at that point, we didn't know a lot about her because the previous doctors either misdiagnosed things, they misdiagnosed her heart, they did not diagnose at all certain things that were present, they told me things incorrectly. So they did like a full, they started over basically. And we did everything. And what we found was that her heart was in managed heart failure. And then we also found that she had rare infant liver cancer. And at that point, she had surgical resection, and then she also did chemo. We also found that she had epilepsy, we had to switch her type of feeding tube. And we were there for eight months. And so basically, that with the NICU was pretty much her whole first year of life. And at the point of, we finished all of these things, we actually accomplished all these things, which I really, there were moments where I did not know if we were going to make it through this, I really did not, there was just so many issues. And I was like we have to prioritize this a lot of care conferences, support from our friends helping us through. And we ended up actually discharging home to my disbelief. And when we got home, I was kind of like, now what?

What am I supposed to be doing right now? Like I don't even know, I think I just was so flipped upside down. Like I had just lost everything. My husband, my house, my money. I had to close my business in the middle, like in the NICU period. Everything was just starting over. And now I have this baby, almost a one year old at this point with medical needs and disabilities. And I just, I didn't, I didn't know what I was doing. I didn't know what I was doing during any of this. And so at that point, it really became like a reevaluation of, what do we need to do right now? Really was still survival mode? Because yes, we had finished that portion of it. But now it became actually addressing the life stuff of my husband leaving and me now being a single mom, and what does that even mean? Like how am I going to work? How am I going to do all these things. And so at that point, I had to really focus in on our life now and how different our life needed to be to accommodate these two very young kids and Ayana's specific medical needs. And the fact that I did not feel comfortable being away from that Austin team, given all of the horrible experiences we had had prior. The home that we were in was no longer my home, I had to move out as quickly as possible as part of the orders. And I hadn't, I didn't have a job anymore. I had to close my business. And I knew that I needed to be home with the girls, I needed to be caring for Ayana at that point, I felt like we were on kind of like a tipping scale where if I did not manage her care for a time that we really could tip back into instability. I felt like she really needed a period of time where we were just trying to keep everything as steady as possible and helping her heal from all this. And so we ended up moving into an RV. I got a used RV on Facebook marketplace and I gutted it and renovated it on DIY and super cheap. And we moved into that I like erected a wall in there and we put her medical crib in and all these things and kind of made it like a little mini three bedroom 350 square foot little apartment. And we ended up moving up, about 40 minutes outside of Austin so that we could be close to her care team that had gotten us through the past eight months.

 

Madeline Cheney  49:34 

Because you were living seven hours from...?

 

Tiffany Pasilles  49:37 

We were seven hours south. So we moved up there, and we just basically started life as a family of three in an RV and my life as a medical mom. You know the appointments and managing all the kids care as a single mom with no support and so that moved us into like your two of her life. And now here we are she's going to be four in September. And it's been a journey.

We're finding our way, it's not been easy, but I don't know that I would do anything different at this point. I feel like I followed my intuitions I followed my faith promptings. And I really listened to Ayana. And we're here today, and she's happy and healthy. And she still has her challenges. But I feel like we're continuing to just keep moving forward as a family at this point.

 

Madeline Cheney  50:27 

That's amazing. Well, and when I hear you say that, like, I just think of all the growth and transformation that you've had, I'm sure throughout this journey, and I would love to wrap up with qualities that you have gained because of this. Are there things that you see in yourself that you're like, I've changed?

 

Tiffany Pasilles  50:45 

Yeah, I completely changed. I don't know how you don't change from this.

 

Madeline Cheney  50:51 

Like, good luck.

 

Tiffany Pasilles  50:52 

Yeah. And it's almost impossible not to be affected by this so deeply, you know, I would say the very biggest way I've been affected by this was, in terms of facing uncertainty, I think we all want to control that uncertainty. Or we want to get out of that place of uncertainty, because it's just so uncomfortable. And over and over and over and over and over again, like more times than I could ever count, I had to like, talk myself through the discomfort of the uncertainty that we were living in in that moment. And there's always going to be uncertainty with her life. I don't know when she's going to pass. That is something that is always looming, and I have friends whose kids have passed away. And it's hard, it's a reminder that her life is really fragile. All of our lives are fragile, if I'm being honest. But in terms of this diagnosis, like, I have to confront that uncertainty, and I have to confront my discomfort with that, and I have to be able to sit in it. And if I'm not okay, it's okay that I'm not okay. Or if I'm scared, it's okay, that I'm scared. Like, I have to allow myself the space to feel whatever I need to feel to keep us moving through that, because there's no way around it at all, but through it. And the more I fight that, the harder our journey is. And that resistance is really felt when I try to fight against whatever is happening at the time. And the more I just kind of try to ease into it, try to just let stuff wash over. Even if I have to, if I have to be that passive. That's the only way that I can get through this stuff today. And I will say like pre-Ayana, I was not capable of doing that, you know, I really fought against whatever was happening at the time, like, No, I'm not gonna let it be this way. And I tried that in the beginning.

It didn't work. It did not work. God was like, No, this is actually not in your control, Tiffany. So none of it is and I've had to try to really seek out the joy in the hard moments too. You know, we were in hospitals with her and things were touching go and I still would have to like smile and laugh and play with Leilani, or the videos I have of the inpatient days where I have Ayana, little tiny Ayana in one hand, and Leilani is playing in the other and they're smiling and like that, to me was what it was all about was just to get those moments together. If we could get up.

 

Madeline Cheney  53:22 

Yeah, I really, really like that. And I feel like that a surrender of control is like, it's against all the most powerful instincts, like we have these instincts to like I want, like tight fist around this and just like I need to control this, I need to fix this. But, you know, I do think that that's a skill that we all kind of need to learn. And especially as we have children that have medical complexities, it's just like, releasing that illusion of control or like trying to control. I also kind of like picture it almost like you're falling down like in Emperor's New Groove And I was picturing like that waterfall like a real like sharp rocks at the bottom, like bring it on, you know? Which has been like fighting the urge to clench and to screaming like now need to be loose. Why fall down this waterfall to my death? Like I feel like it kind of goes against all instincts kind of like that would but like that it does make really tough things just a little bit more manageable or like a little bit less horrible.

 

Tiffany Pasilles  53:22 

Yeah, it takes the edge off a little bit. It's almost it reminded me of childbirth with my first like, yeah, because I had a natural birth. That was something and I just feel like the more I was clenching and like fighting it, the harder and harder it was and I felt that same resistance during certain times of Ayana's journey where like doors would close, everything would start like going wrong and because I was fighting, fighting, fighting, trying to force things into how I wanted it to be and...and I still I feel like it's a constant practice. I constantly have to remind myself every day like "okay, I need to relax. I need to let this be or let this person be or just let the situation be and understand that I can only do so much."

Sometimes I have to just kind of hands up and let things kind of play out a little bit. And then I can decide what needs to happen at that point. Yeah, I mean, it has to be a constant back and forth. Because you're not saying to give up, it's very apparent from your story. Like, there was plenty of advocating plenty of fighting and doing what it took to get her the care she needed. But like you say, it's like realizing at certain points, like, "hey, I've done as much as I possibly can. And I'm gonna like, kind of sit and wait and see what happens. So I know what to do next." I love how you phrase that because I think that's an important like distinction.

 

Madeline Cheney  55:34 

Yeah, especially as a single mom, too. I think the resistance is a dynamic that is played up even more too as well.

Well, thank you so much, Tiffany, I loved hearing your story. And I know that it's relatable to so many people listening and I just really appreciate you coming on.

 

Tiffany Pasilles  55:52 

Thanks for having me.

 

Madeline Cheney  55:54 

 Head to the website to see adorable photos of Tiffany and her family, or follow her on Instagram. There are links to follow her and me in the show notes. Also in the show notes are links to Functional Formularies website, and all the ways to learn more about and try out their products. You should do it. You'll be so glad you gave it a shot. Join us next week as Tiffany and I talk more about the ending of her marriage and what being a single medical mom looks like for her. Don't miss it. See you then.

 

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Ep. 107: Season 6 Finale episode w/ Brittany season 6 finale https://d3ctxlq1ktw2nl.cloudfront.net/staging/2022-10-9/295951222-22050-1-4c66a0f45d1b8.m4a

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68: Dipping My Toes into Educational Advocacy

 

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