When Sarah was assigned to care for baby Zariah in the NICU, she fell in love with her. When Zariah’s birth parents neglected to visit or be involved, it was clear that Zariah would need a foster home, and eventual adoption.
Sarah immediately knew she was meant to be her mother. Convincing her husband Steve was another story. Because of HIPAA laws, he wasn’t allowed to meet Zariah until they were officially her foster parents. Miraculously, he agreed.
After several months as a family, Zariah passed away as a result of a tragic trach accident with her home health nurse.
In this episode, Sarah shares their journey with Zariah, and all the love they share.
Follow Sarah on Instagram @adoptive.foster.medical.mama.
Answer this month’s question.
Join Parents of Children with Rare Conditions FB group.
Sarah Yates 0:00
But I was like, no excited. I'm like, I am officially and legally her mom like My name is going on her birth certificate now. And like I was just, I was so excited.
Madeline Cheney 0:14
Hey, you're listening to The Rare Life. I'm your host Madeline Cheney. And I'm honored to share with you our very first story episode of season five with parents Sarah Yates. Like some of us, Sarah met her medically complex daughters Zariah for the first time in the NICU. But when Sarah met her daughter in the NICU, she met her as her nurse unaware that she would become her foster and then adoptive mother in the ensuing months, their story is truly remarkable and full of love. But before I tell you more about that there is a new question of the month. It is what is your go to self soothing activity? What brings you comfort when you need it? I'll offer mine as an example and a little bit of getting to know you, I guess, my go to is a Perry Mason episode, which is an old murder mystery from the 60s. And then when things are really rough, I eat the chocolate just ice cream I can find right out of the container. So head to the website, the rarelifepodcast.com And to share your go to self soothing activity with us. There is a link in the show notes for that. In this episode, Sarah shares what it was like to hold Zariah for the first time when she was assigned to be her nurse and her husband's response when Sarah felt drawn to foster her. She also tells the story of Zariah tragic passing away at 20 months due to each week accident with a home health nurse. And now I pause to offer a trigger warning. During the second half of our conversation, we go into full detail of what it was like for her. So please take a moment to assess if you should listen. If you do decide to proceed with the episode, I just advise you to be gentle with your heart and what it may bring up for you. Some of you have expressed before the need to kind of mentally prepare the day before an episode releases and then the process at the ensuing days after. And I think this episode will definitely be one of those. That being said, this episode is full of love and beauty and so much realness. It's all still very fresh because it occurred only four months ago. Okay, so I actually have just a little bit of backstory on how this episode came to be. So Sarah was actually supposed to be the NICU nurse in the episode Confessions of a NICU nurse back in season four, it was going to be her special topic episode actually. And only a couple hours before we were scheduled to record together, Sara messaged me and told me that her daughter had gone into cardiac arrest and that they were in the hospital and that she didn't think she would come home. And I'm not gonna lie, I was a mess. I think the way it happened where I was like all set to hear this beautiful story of how much she loves her. And then to know that instead of sharing that story, she was in the hospital knowing that her daughter was going to pass away. That was just it kind of unglued me. And I just was aching for Sarah and the situation she was in. Then fast forward several months. And I received a message from Sarah telling me that she was ready to try again and I was pleasantly surprised. I did not expect that. And I am so happy that we can still share her daughter's story and the love that they have for each other. And so here we are. Alright, let me introduce you to Sarah and fam. And then we'll dive in. Sarah and her husband Steve currently have four foster children. We will refer to them by their initials for privacy. So Kay is 10 months old. X is 20 months old. J is six years old and B is seven years old. So she jokes that they basically have two sets of twins. They live in Missouri and Sarah has been a NICU nurse there for almost three years. Sarah is a lover of children and being outside. Let's jump in.
Madeline Cheney 5:00
Hi, Sarah, welcome to the show.
Sarah Yates 5:04
Hey, it's so great to chat with you.
Madeline Cheney 5:09
I'm really excited to hear you know more about your story with Zariah. And I think it's a really a very interesting story. And it is full of love. And so I'm really excited to hear more about her and about her journey together. So I would love for you to kind of start with the first time that you met Zariah in the NICU, and I'm assuming that it was different than you know, maybe the other babies that you've cared for in the NICU. So I'd love to hear about that first moment.
Sarah Yates 5:39
Oh, yeah. So first time, I met her so she was born at the hospital where I work, and then she was transferred to St. Louis Children's. And then she got sent home with her biological family. But five days later, she had had like a huge apneic episode and then got readmitted at St. Louis Children's into their NICU again, as and she had just been there. But parents were not visiting. So they decided to try transferring her back to the hospital where I work at to see if maybe parents would visit more. The first time I met her, I was taking care of her. And I walked in there and it kind of took me aback at first as we're not used to having like kids that are a little bit older that got transferred in and she was just super fussy. I think she was just lonely. And first, I like wasn't really sure what I was supposed to do. Like she could keep the pacifier. Now it's like she couldn't move her arms and people my hospital. I'm familiar with her. I'm like, Okay, what am I supposed to do with her arms? How can I stretch them? Like, how do I even get close on her because their elbows don't bend. So I think that initial moment, I was maybe a little bit taken aback by her because she was just so unique and different. But like, as the shift went on, I don't know, I feel like over that 12 hour shift. She just like slowly captured my heart. And then I like had a break in my day. And she was really fussy and stuff. So I decided I was gonna hold her side some time. And so I was like holding her in the rocking chair and stuff. And she was just looking at me with her like big, beautiful blue eyes. And I was just like, I don't know, like my heart. Just like completely melted. From that moment on. I was like completely in love with her. People in the NICU fell in love with her as time went on. But I think at the beginning, people were just kind of trying to figure her out and everything. So we can sign up to have primaries in the NICU, which means every time we work will take care of them. I decided not to sign up for even though I was like, definitely in love after that first day. Because I had heard how her bio family was like very hard to deal with. And I wasn't sure if I was quite prepared for that. And yet, but then like another month went by and parents hadn't visited at all, the entire month she had been back, they may be called once. And so then I was like, oh, like we're actually not really gonna have to deal with their parents a whole lot. So I did go ahead and I signed up to primary her at that point.
Madeline Cheney 8:13
Oh my gosh, it's so interesting to hear you talking about, you know, meeting her and these parents that weren't there and involved in her life. I think like, especially like for me and probably people listening who like that would have been our child, right? Like, a lot of our children were in the NICU and so picturing, I don't know, I feel for that family and I feel for the Zariah like being in there without that parent involvement in that love. And what a tender moment to picture you holding her and, and her having that connection with someone that would become her mother. So I would love to hear more of a story. So what happened next?
Sarah Yates 8:58
So, a couple more weeks go by and I start hearing the social worker and people talking about how she's probably gonna end up in foster care. So at that point, I don't know, I just felt like that was tugging on my heart like this is something you're supposed to do. Then, of course, I had to get my husband on board with it. The social worker, my hospital wasn't like, very helpful. At first, she wasn't officially in foster care yet. It had gotten delayed. They kind of told bio mom that like, "Hey, we're going to take away custody because you haven't been here in six weeks, like we've had no contact from you really in six weeks." And then of course, she shows up that night. And then she visited a few more times after that and then stopped coming again. So that delayed her coming in foster care for about a month but like during this time, it seems like kind of inevitable. So at first I was like really trying to push my husband like I really think this is something we're supposed to do and stuff and he was kind of like whoa, like he has no medical background. He can't even meet her until like we agree to foster her because of HIPAA. stuff like he can't, like can't see her and stuff. So he has to agree to this without ever meeting her.
Madeline Cheney 10:06
Oh, wow. Like wow.
Sarah Yates 10:10
Once she does actually come into foster care, the caseworker contacts us, they're like, oh my gosh, like, we did not think we would be able to find anyone to take her for like a long time. Just because she had the trach the G Tube, just like so much stuff going on. But eventually, I was talking to my mom and I kept trying to push Steve into letting us take her by mom was like, This is gonna be really hard. Like, you don't want to push him to do something he doesn't want to do. Because like, If this ends up going really bad, like he might end up like resenting you for this. And so I just prayed about it. And I was like, God, if this is really your plan, like I feel like it is please change his heart. So I like did not bring it up for a week and a half. And then he like came to me, like out of the blue and was like, yeah, like, I think this is something we should do. And I was like oh.
Madeline Cheney 11:00
Wow, I can't even like I'm picturing, like, from Steve's point of view. Like, cuz you didn't have any children yet. Right? She was your first
Sarah Yates 11:08
No, we had been married for three months when I first met Zariah.
Madeline Cheney 11:12
Oh my gosh. Okay. Yeah. So like, picturing from his point of view like that is so I think that's really tender honestly, to like, picture. him feeling this connection to her and his heart opening up to her without even meeting her. Like, I just love picturing him in that process. And that moment where he came and told you like, Yes, let's go do this, this thing that you wanted so badly. What was that conversation like?
Sarah Yates 11:42
Well, I was like, kind of surprised at first, but I was just like, I was just so excited. The caseworker when she talked to us also said like, we're pretty sure this case is going to go to adoption. So if you're going to take her, we want you to be at least a little bit interested in adoption. And again, Steve could not meet her until, like, we agreed to this. And so I said, we couldn't like fully commit to adopting her yet, because he had never even met her. But like that we were at least like a little bit open to it.
Madeline Cheney 12:15
Wow. Okay. So what was that like then? When can you foster someone while they're still in the hospital? Like, were you already her foster parents while she was there?
Sarah Yates 12:24
Yes, we were.
Madeline Cheney 12:25
Oh, my gosh. So Steve met her in the NICU then, right?
Sarah Yates 12:30
Madeline Cheney 12:31
Okay, what was that like?
Sarah Yates 12:33
We were walking over to her bed space. And he almost like started tearing up immediately. Like, from the first moment he met her. He like laid eyes on her. He was like, Yes, we're doing this. We're adopting her. She's supposed to be my baby. And it was it was the sweetest thing.
Madeline Cheney 12:49
Oh my gosh, that was like, seriously, that was tender. They I'm gonna start crying. Just thinking about that. That was like, just so I remember Okay, so like, I remember when I first you know, quote, unquote, met you in my Facebook group. When you posted a picture when the adoption was official and you told your story and like your story with Stephen uns Araya has always been so full of just love. And I think that's really amazing. And obviously doesn't take away like, I'm sure it was still hard, you know, and giving her the, you know, the care she deserves and you know, adjusting and things, but I don't know, I think that's so sweet. I know, we talked previously about how having a child with medical complexities, processing that probably was very different than most of us where a lot of us will experience grief because we expected our children to be healthy or at least did not expect them not to be healthy. And then we have to grieve, you know, what we expected, but obviously, for you that was different. What was that? Like?
Sarah Yates 13:48
Yeah, I mean, there was really like, almost no grief involved. It was really just all joy. Like, I don't just being her nurse, and like, I mean, we had lots of time with her in the NICU and stuff. We knew everything that was going on with her. Like medical history before we ever took her home. It was really just yeah, all joy. Nothing was really surprising. We kind of prepared ourselves for what we were getting into. And honestly we both said when we took her home in October like a few weeks later, we were like this was actually a little bit easier than we were expecting it to be like I think we had prepared ourselves for like, the worst and being like really, really hard and then we're like oh, like this is like totally more doable. We thought it was gonna be like this is not that bad.
Madeline Cheney 14:34
Yeah, yeah, like it all just sounds so natural, right? Like just the the process of you holding her and feeling that connection and then finding out that she would be going into the foster care system and then Steve like, opening up to her before he even met her like it all just seems like it just fell into place. Like, I don't know, like definitely meant to be. I don't know.
Sarah Yates 14:55
It did definitely feel like throughout pretty much the entire time that it was like meant to be everything. As far as foster care goes, like everything with our journey, like, went basically as smooth as it could have been. And yeah, I mean, Steve had months to get used to like caring for her and getting used to all of her needs. So by the time we actually took her home, like Steve felt so comfortable with all of her stuff, so.
Madeline Cheney 15:22
That's awesome. So how long was she home before the adoption was official?
Sarah Yates 15:27
Madeline Cheney 15:29
Okay, so it was six months. For those of us who have never, you know, have not experienced fostering or adoption, how would you describe just that whole process like a first fostering a child and then to adopt her? What was that like?
Sarah Yates 15:44
I think now we have other foster kids. And so these cases are not going as smoothly. So now I realized just how it didn't seem always super smooth at the time, but now I'm like, oh, yeah, actually, this one. So there was one point where her mom briefly said that she did want her back. And I had like, complete meltdown, I was like, calling my mom, like went in the car for a drive. I was like crying in the car. I was like, Oh, my gosh because the mom just randomly showed up for a meeting, she had never been a part of one of these meetings before. And then the caseworker called me afterwards. And she was like, I didn't know she was joining the meeting until 15 minutes ahead of time, like, I have to go through all these steps and check all these boxes. But like, in the end, I think this is still what's going to happen. And so that helped calm me down a little bit. But like in that moment, like right after that, I was like, a complete mess.
Madeline Cheney 16:33
Oh my gosh, I can't even like, because at this point when she was like, yeah, maybe I do want her back. Like, I'm sure you were completely in that role of mother. And I just imagined, like, what it would be like if someone like had the legal right to like, come take my child away. Like, I'm sure that was pretty terrorizing, too.
Sarah Yates 16:55
Oh, yeah. Plus possibility with foster care now that we've had more experience with foster care. Like, in my mind, I like know that really, like any thing could happen. And like one of my kids could get moved in that would be super hard. But like, I had no experience with it at this point. And like, basically, all I'd been told is like, yes, we are moving forward with the adoption and everything. And there had been no hiccups in that. And so I think now I would have handled it a lot differently. But at that time, yeah, it was just a mess. Yeah.
Madeline Cheney 17:26
Yeah. Oh, my gosh, yeah. So when she was officially yours, then was that just like this euphoric closure, like, now I can fully like, be her mom and not have that concern. Like, in the back of my head.
Sarah Yates 17:40
Steve didn't feel the same way about it. He was like, well, life is exactly the same as it was yesterday. But I was like, no excited. I'm like, I am officially and legally her mom, like my name is going on her birth certificate now. And like, I was just, I was so excited.
Madeline Cheney 17:59
That's amazing. I love that. When did you start fostering your other children? Like where in the timeline was that?
Sarah Yates 18:06
We took our second placement in December while we were still fostering Zariah. Okay. And she was six and was with us for three months. And then we got X in April, we got him two days after Zariah was adopted.
Madeline Cheney 18:23
Oh my gosh. Oh, that's so sweet.
Sarah Yates 18:26
Yeah, he's a medical baby, too. And so like, we got called from the agency, and they were like, yeah, like, you were the first people we thought of for him. So it was actually I got that call while I was at work. So I got off work at like 7:30. And, like, drove to a neighboring county in the dark and picked him up and brought him home, my goddess.
Madeline Cheney 18:43
Was that like, I'm just picturing like, you know, after you learn, like, I don't know, the medical world, and especially where you're a nurse, right? Like you have this experience. Do you love like having that experience? So you you are more capable of taking these children that might otherwise have a hard time being placed because of their medical issues?
Sarah Yates 19:04
Oh, yeah. I love it. And Steve loves it, too. He, I don't know. He just, he like loves our medical babies. He just feels like yeah, we're qualified to take these kids that other people feel uncomfortable with.
Madeline Cheney 19:15
Yeah, I mean, like, to be honest, after figuring out like, a huge learning curve with Kimble and stuff. I was like, Okay, now that we figure this out, like, I mean, like, I could take care of other medical babies, you know, like just knowing what kind of learning curve it takes to be a non medical mom or dad. It definitely opens your heart to like other children that need that care. And so I can imagine that being really fulfilling.
Sarah Yates 19:40
Yeah, yeah, definitely. And I think there was a slight learning curve when we took Zariah home because I don't know just figuring out all the appointments and scheduling everything. And even though like I knew, I knew a lot of the doctors from working in the NICU. And like I understood everything they were talking about. There's nothing anybody had to explain. To me a few times doctors would like go on explaining things and then they would like, realize partway through that I was a nurse and they're like, why not stop me like you exactly like, what a shunt was explaining it to me. I was like, well, I didn't want to sound like a know it all or be rude or anything on a roll. So I just let you keep going.
Madeline Cheney 20:21
That is so funny. Like, that's like the opposite issue like that I run into it's like, wait, don't just assume I know what you're talking about. Explain it, but you're like the reverse. Oh, my gosh, that's so funny.
Sarah Yates 20:34
Yeah. And then after we did things with Zariah, like, I got access to the same pediatricians or I had like the very next day, and like, went into the office like he had had. He was 14 months old and really had no medical care his whole life with all of his needs. And so I went into the pediatricians office, like, I need this, this, this, this, this, this and this. And then he had one more idea of like, one more specialist add list. And so we just got it done. He's fantastic. And he just put all the orders and for therapists, and for all the different specialists he would need and everything.
Madeline Cheney 21:09
That is like the best thing. I just like love picturing him being scooped up by you guys, like full of love and love the knowledge to care about him and like, just yeah, we're gonna get you into specialists. We're gonna take care of you. And how old is he now? How long have you guys had him?
Sarah Yates 21:24
We've had him like over seven months now. Yeah, so we, we've had in since April.
Madeline Cheney 21:33
Okay. And that kind of leads me to like, I don't know, I guess like part two, or like the other half of the story, right, which is when the accident happened with Zariah that led to her eventual passing away. And I'm sure it's like, still really raw. And it's a difficult topic, especially the way it happened. But I would love for you to share as much as you're comfortable with but like, could you bring us to that day in the circumstances and what was happening?
Sarah Yates 22:03
Oh, yeah, so I'll start the night before actually. So the night before, I was working like two shifts in a row. We were just all hanging out in the basement. Like I was holding her cuddling her at all that she had had some seizures a few months beforehand. And then she had had Rhino virus a couple of weeks after that. So that night was like the most she had acted like herself in about a month. And so we were just like enjoying being with her. She was very smiley, like she was moving her legs the most she had in like a month. And just, we would always play like little games like I would hold my hand out and say like Zariah I get it and she would like kick my hand. And then I would praise her and she would get all excited and stuff. And then it was time to go to bed and my husband was like, oh, like cancer at me. I'll put her to bed and you get other kids for bed. And I was like No, and I was like holding her tight. And give me your husband. I was just kind of joking around. And then I eventually handed her over to him. He put her to bed. I mean, it was just like any other night I woke up in the morning to go to work. She was still sleeping. I was running a little bit late. A lot of times I would go say goodbye to her give her a kiss. But I was running late. So I just headed out the door. My husband was working from home that day. It was about I think it was around like 11 o'clock. My husband had run to the grocery store he had done like a Walmart pickup. I was just at work minding my own business, I get a phone call a lot of times don't even answer phone calls at work. I answered them more often now that I have kids, but I just decided to answer this one. And then it was from EMS. And they were saying that there I was in cardiac arrest and nothing they were doing was working and that I needed to get home immediately. And they were gonna keep doing CPR until I got there. And like, I just didn't even feel real like I had gone it's like an empty patient room to answer it. And I was walking out of it and like a couple of my supervisors were out there. And I could barely get the words out like it just didn't feel real. I was like in complete shock. I think I was stunned look on my face and like I barely get out the words and I'm like, Zariah is in cardiac arrest and like I need to go like right now. And so one of my supervisors is like, Oh no, you're not driving like I'm driving you and so as we are on our way out, I get another phone call from EMS say that they got a pulse and that they are on their way back to the hospital I workout. So like we were about sleeping parking lot so they turn around. We go into the ER waiting room. It was probably only a few minutes, but it was like the longest few minutes in my life. I was just like, sobbing and then I suddenly see like all of these like police cars and ambulances and like fire trucks like going around the corner like I had never seen that many emergency vehicles in a row. There are probably 10 of them are more like bracing to the hospital. Like I've never seen this before and they're like 10 vehicles accompany my daughter to the hospital. Like my supervisors are trying to comfort me and be like okay, they got a pulse but like with my medical background in my mind, I was like It would take a miracle for my daughter to come home. I knew like after doing CPR for that long, I'm like, she's probably not recovering for this. And even if she did by some miracle recovery, like she is never going to be the same. Which was really hard. Because I'm like, like, I knew in that moment, I had seen her smile for the last time.
Madeline Cheney 25:21
Right? So you already were on the way to accept or not accepting, but like, that was final to you.
Sarah Yates 25:26
Nowhere close to accepting it, my heart was nowhere near there, but in my hea. And then they pull up. My husband, that there are so many people working on her that like he couldn't go in the ambulance with her. So back up, like my husband had gotten to the house like two minutes before EMS got there. So he was there. When they came to get her and everything, he saw them doing CPR on her, which I think he still has PTSD from. And they take her in the ER, like, We're both just like completely sobbing and like crying uncontrollably. While they're like working on her somewhere, they take us into like another room and like the social worker from the NICU actually, who I know comes down and talks to us and stuff. And they eventually, like told us that they had gotten her stabilized and brought us up to the PICU and said, like, she'll join you like after the CT scan. And I mean, we're just in like, complete shock. Like, it just doesn't feel real. Like an hour ago, everything was fine.
Madeline Cheney 26:27
Oh my gosh. And so just I mean, like I always say I know this, but like for those who don't know, like, what caused the right to go into cardiac arrest and eventually pass away?
Sarah Yates 26:39
So in the 45 minutes, my husband was gone at the store, we had a home health nurse that was there, four to five days a week. She had been working for us for about six months, I thought she was very capable watching her and everything. But I guess her trach had come out when she was moving her from the couch to her bedroom. And she noticed almost right away, she wasn't breathing. I think she just panicked and like, didn't do any of the things she was supposed to do. I mean, we got the 911 recording, you can hear the dispatcher like telling her like how to bag her with everything. It's like, Oh, are you seeing chest rise and stuff? And she was like, No, I don't know. I don't know if I'm doing this right and stuff. But like throughout all of this, she like never checked to make sure her trach wasn't in her trach was actually going down the front of her neck instead of like in her stoma.
Madeline Cheney 27:33
So that one like, small gesture, like putting the trach back in, would have made all the difference. Right?
Sarah Yates 27:40
Yes if she would have put the trach back in like she would have been completely fine. Like within the first couple of minutes or two would have been fine. She never started CPR either. Like my husband got home to us for EMS, and he is actually the one who started CPR. Like she did not have a viable pulse when my husband got home.
Madeline Cheney 28:05
So that must have been so traumatizing for him to like, just picturing him coming home from the store. And like in that situation was probably so hard. Understatement.
Sarah Yates 28:19
Yeah, he got home and didn't know anything was happening. This nurse never called us which if she would have called me like, that's the first thing I would have told her to do. Which is, I just feel so much guilt knowing that if either of us were here, like she would probably be like completely fine to this day.
Madeline Cheney 28:38
Yeah. I mean, that makes so much sense that in a situation like this, that like was so preventable and stuff, just that there would be so many like, why, like, why didn't I like feel like wait, I should call and see what's going on? Or why didn't I go kiss her goodbye, or why? You know, I feel like this kind of situation you could like just be eaten alive by the whys, or the why nots. And that's probably really complicated to grief?
Sarah Yates 29:05
Yeah, I feel like it's getting better. But there was just so much guilt at the beginning. And like, I would talk to people and stuff and they're like, you can't be there for your kid 24/7 like you thought you were leaving her in capable hands. Yeah, like, there are all these little decisions that if you would have made these decisions differently, like this probably wouldn't have happened, but you were acting on information you knew then and like, the decisions you made at that time, were fine based off of like the knowledge you knew, like you didn't know this was going to happen. Like total laughter with the nurse that's been watching her for six months, and there's been really no issues.
Madeline Cheney 29:39
I mean, like, I totally agree with those people. I feel like so I'm a carrier for my son's condition. And like, there's definitely a lot of guilt with that too. Because I was like, Oh, I gave it to him, even though I didn't know about it and stuff and it wasn't on purpose. But like, I think sometimes people try to like, logic away your guilt, but I think guilts a hard thing to logic away. I mean, like I get logically that it wasn't like my fault. But like to feel that it's your fault, I think is you know, that's really really sucky. So going back, I guess to like your story. So Sariah was transferred up to the PICU. And then what did you find out about like her CT scan?
Sarah Yates 30:21
I mean, it looks completely awful, which I was already thinking in my head, like, there's a very good chance she's brain dead right now, which I knew in my head. But when the PICU attending, he said that, like I just lost it all over. Like I finally like, calm down for probably about 20 minutes. And then like, he said that and I just like lost it all over again. And then luckily, with COVID, really should have only been me and my husband allowed up there. But like, I had talked to the social worker down there. I was like, I need my mom. So they let my mom come up. And I just like sobbed in my mom's arms. I don't know, like, my husband is a comfort too, but I don't know, in like a situation like that. I'm just like, I need my mom.
Madeline Cheney 31:08
Yes. Oh my gosh, yes. No, I feel that so hard. Like, it's like in those kind of things. It's like, mom, like, I'm hurting. Like that kind of pain. I feel like, or like not knowing what to do. It's just I think it's very natural to want to go to like that parental figure and like, fix this or like, help me. Yeah, even tell me what to do.
Sarah Yates 31:27
And now I'm like a full fledged adult. I'm like, Yeah, I need my mom.
Madeline Cheney 31:31
Yeah, totally. I mean, like, I totally agree with that. I think that must have been a really heartbreaking but tender thing to have, you know, your your mom there and to, I don't know, hopefully feel that comfort, at least in a small degree. I'm sure it was inconsolable.
Sarah Yates 31:51
I was pretty much crying inconsolably, probably 90% of that day.
Madeline Cheney 32:01
Yeah. So what ensued in the next you know, the following days, what kind of decisions did you guys have to make.
Sarah Yates 32:07
So later on in that night, her pupils did start responding. And she was starting to trigger some of the breasts on the ventilator. So they were like, oh, like, we're pretty sure she's not actually brain dead. And so she was actually doing a little bit better the next day, which was, I think, made things harder, because we had just like a little sliver of hope. I knew she was never going to be the same. But I was like, oh, like, maybe she will come home. But then there were like, no major decisions or discussions made that day. But overnight, she had like a continuous EEG on. And her brain activity decreased so much overnight, that they thought something was wrong with the machine. But there wasn't, and it like never improved. Those lines are almost flat. After that point, she was triggering less breaths on our ventilator, and her pupils did stop responding again. So they did determine that she did have a little bit of brain function, probably just barely above brain dead, but they had to wait to do like an MRI on Friday. So we decided, okay, we're not making any decisions until Friday. Also, there's like a new neurologist at the hospital. And I guess he'd come in, I was out like, I just needed to get out of the hospital. So I knew we weren't even making any decisions until the next day. And like my best friend and I, we just went to a park and like, walked around, and I cried some and like, I just needed to, I just needed to get out for a little bit. I think I was only gone for like an hour and a half. But while I was gone, the neurologist comes in and tells my husband that his recommendation is withdrawing care. And so like my husband wasn't prepared for that at all he was I think it's probably a cultural thing. I say it had some problems with him in the NICU to just comes in very matter of fact, like, this is what I see. Like, these are my findings. And based off of this, this is my recommendation is. I guess I think my husband had a little bit more hope than I did. We have a little bit hope the second day, but next day, I think my husband was a little more naive, like he didn't know all the medical stuff. I didn't want to just like crush the little bit of hope he did have we hadn't gotten the MRI yet. So I was just kind of letting it be. I mean, obviously he knew things were bad. So that was like super hard for him and I wasn't even there. And so then the PICU attendee found out in the social worker, and they were like furious like they could not believe that had happened. And they were like apologizing, like again and again. Because again, like we had talked about like nothing is going to be discussed like this is not going to be brought up until after the MRI on Friday. And this was Thursday.
Sarah Yates 33:40
And and you weren't even there like that. They had that conversation without you. And in that way.
Sarah Yates 34:52
Yeah, gosh, I felt so bad for him.
Madeline Cheney 34:56
Yeah. And especially where he like he's still had that glimmer of hope? Yeah, that probably was extra, like brutal to hear it that way.
Sarah Yates 35:04
Yeah. But then yeah, on Friday, we got them ri, and we like we're expecting it to be really bad. But it was like, even worse than we were expecting it to be like her brain stem was like even more significantly damaged than we had thought. Even then the PICU doctors told us like, don't make any decisions tonight. Sleep on it, like come back in the morning. We're not rushing you like, but like we kind of we both knew at that point. It was very, she was very stable, but it was like she was not any sedatives. Like she was not moving at all. Like she was not responsive, even a little bit like her MRI was terrible. It was obvious she was never gonna be coming off a ventilator like, and it wasn't because her lungs were crap. It was because her brain like she just like could not breathe on her own. So yeah, that was hard. Like, even though we had discussed it. We had like, made that decision. And I cried a little bit, but like not uncontrollably. But whenever the PICU doctors rounded, and like I had to tell them that that was the decision we made. I just like I cannot even get the words out. I just started like bawling, crying. I'm tearing up a little bit right now. But I wasn't expecting myself to cry that much. Because I hadn't cried that much when I discussed it with my husband. But I think telling the people who like actually, like, going to carry it out. Like this is the medical team. Like that was just yeah, that was really.
Madeline Cheney 36:30
Yeah, I remember because like, I was following your story, you know, while this was happening, and I just remember, like just imagining what it would be like to be responsible for making that call. And even though like you say, like, it was very clear, you know that that would be the right decision, like still being the one to decide that. When you love her like that. I think, for lack of a better word, like understatement, but that'd be so hard.
Sarah Yates 36:54
Yeah, to make that decision was even harder than I thought it was gonna be. I kept like, second guessing myself. Like, I think I had a little bit of an advantage because I had worked in the medical field. I had seen stuff like this happen before. And so I had already thought it through like, yes, if my kid is in this situation, like, I'm not just gonna prolong like their death, like we're gonna remove care, like, we're gonna do the right thing and everything. But then when it actually like came time for me to do it. I was like, Oh my gosh, like, I know, this is the right thing. But like, this is so much harder than I ever imagined it being. Most people have probably never thought of that before. But like just I saw that all the time from working in the NICU, like, unfortunately, like, few times a year we have to withdraw care on babies. And it's like, heartbreaking, but it's just something you think about when you work in the hospital.
Madeline Cheney 37:44
Yeah, yeah, I think it's like every parent on this earth like, worst case scenario like that. You would have to make that kind of decision. And especially where it's like, because you love her. Right like it's such a such a tangled up mess of like, Oh, I love her so much. I'll let her go. But I love her so much. I don't want her to go. Yeah. So what was that? Like then those last few hours you had with her?
Sarah Yates 38:07
Okay so we had told them on Saturday that we wanted to withdraw care but we had said we're gonna withdraw care on Tuesday. So it wasn't like immediate like yes we're gonna withdraw care. Now. We're like we want this weekend. We just want to like hold her and love on her because we hadn't held her at that point. Which I think looking back on it, I probably could have but in the NICU we have a policy like kids with our outlines cannot be held because it's such a bleeding risk. And she had had an art line. So I just assumed I couldn't hold her. And nobody had brought it up. And so on Saturday, I was like, since we made this decision, like I want a lot of the lines out except the ones keeping her alive. And like I just want to hold her I just want to hold my baby. So yeah, that first time I like killed her after the accident. I was just like, I know, I kept it together until like the nurses left the room and they like pulled the curtains and stuff. And I don't know, I just started like, sorry, I'm like tearing up. Yeah, I just started like bawling. And I was just like holding her. Just like whispering in her ear. Like I'm so sorry that mommy wasn't there to protect you.
Sarah Yates 39:16
Yes. Sorry. I'm like, yeah. Yeah, in that moment, just holding her there was just so much guilt and like as a parent, like you feel like it's your job to protect your kids. And like, I don't know, I just felt like I had failed.
Madeline Cheney 39:38
Yeah. This was so hard to talk about. I just appreciate your vulnerability in like sharing this where I know it's so it's still so raw and near and dear to your heart. And I would love to just wrap up with one last question. And I know it'll be a tough one but I would love to know what would you if? What would you love to say to Zariah today? If she were here?
Sarah Yates 40:08
Ah I don't know it's just so hard going out to her grave. I think I've only been out there like three or four times. The first time I went there was like a month after she had passed. And yeah, I just like sobbed, for like 20 minutes straight and then I don't know that I just started praying. I was like God, like if, like, you can let Zariah hear this right now. Like, like, I would really appreciate that.
Sarah Yates 40:39
And then I just started telling her like, just how much Mommy loves you and misses you and that I wish she could be be here to me like her future siblings and I'll never forget about her ever. And I like yeah, I started talking about which I know, like, I posted something about this. And some people got kind of offended with disabilities. But I mean, like being a Christian and stuff like we believe like that you get like new bodies in heaven. And so I was just talking about it. I was hoping she was having lots of fun up there like running and playing, laughing and doing all the things she couldn't do here.
Madeline Cheney 41:47
Yeah, that is so beautiful. I am just I'm so grateful that you are willing to open up about this deeply, deeply personal and painful thing and also full of love and just so much emotion. So thank you so much for sharing. You know your journey with Zariah in your love for her with us. You can find adorable photos of Zariah and her parents and answer this one question on the website. There's a link in the show notes. You can also find adorable photos of them by following Sarah on Instagram, and I'll throw a link in the show notes for that as well. There will also be a link in there for the Facebook group that we mentioned in the episode. It's called "parents of children with rare conditions." Join Sarah and me next week for her special topic episode as we dive into some difficult feelings that she's dealt with towards the home health nurse involved in the accident. And her children's birth parents among other things, don't miss it. See you then.
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