A Mother’s Intuition: “I Knew Something Was Wrong” | Brittany Brinson

In this episode, Kerri Fitzgerald talks with Brittany Brinson, a PICU nurse whose son wound up in her hospital ward due to a rare genetic liver condition called progressive familial intrahepatic cholestasis or PFIC. For 3 months after her son Corbin was born, Brittany searched for answers about her son’s health, often dismissed by others in the medical community. After his symptoms worsened and he landed in the hospital with a brain bleed, the family finally got much-needed answers. Brittany shares her family’s story and explains why healthcare workers also need support. 

Key Highlights: 

• Hear why Brittany Brinson first had concerns about her son’s health. 
• Learn about Corbin’s rare genetic liver condition PFIC and the impacts of this condition. 
• Hear how connecting with others and speaking at the recent Cholestatic Liver Disease Summit was an important experience for Brittany and her family. 
• Be inspired by Brittany’s nonprofit, Moved by Their Compassion, which seeks to provide resources for healthcare providers. 

Transcript:

Kerri Fitzgerald:

Hello and welcome to My Hero 360. Today, I’m speaking with Brittany Brinson. Brittany, thank you for joining My Hero 360.

Brittany Brinson:

Yes, ma’am. I’m happy to be here.

Kerri Fitzgerald:

Awesome. Brittany, you are a PICU nurse, so you are familiar with the medical world and helping people, helping patients with their medical needs. Now, a few years ago, you and your husband experienced a medical situation that hit close to home after your son Corbin was born. Can you talk to me about that experience? How did you realize something was going on with your son? What did you and your family come to learn about that?

Brittany Brinson:

Yes, ma’am. I think in one word I can describe that experience as traumatizing. As a PICU nurse, you’d never think anything like that would happen to one of your own. But Corbin was born jaundice, which they said isn’t unusual for infants. He got his vitamin K, like any other newborn. They sent us home. No bili lights or anything. They just said, “Just get labs repeated and at the 3-day mark.” Got the labs done, bili was still high. They said, “Feed him formula with the breast milk.” One-month check-up comes, he’s still yellow.

As a first-time mom, it’s like, that doesn’t seem right. But I’m a first-time mom, so maybe it’s okay. But I was trying to advocate. Can we get those same labs done again just to see are they coming down, going up? They blew me off. His pediatrician at the time was mine when I was growing up, so I thought she…yeah, sure, let’s do it. No. She told me to stop being a nurse and be his mom.

I left her and found a different pediatrician within the same practice. Two-month check-up, he’s still jaundice, still yellow. I asked again, “Can we get the labs done?” He said, “No, put him in sunlight.” It’s November. How am I putting him in sunlight in Ohio? By that point, I was like, okay, maybe I am going crazy. First-time mom. Maybe I am bringing what I see at work home. Maybe he is fine, it’s just taking him a little longer for his liver to work. Three months of maternity leave is up. I returned back to work and I went to go pick him up from my mom’s after my shift. He was projectile vomiting. COVID was a thing at the time. I had to work Christmas night, so I thought maybe he got COVID from a family member, because we have family members traveling. Who knows?

Again, I’m still playing in my head like, he’s fine, I’m just bringing work home. Took him home. We both went to sleep. I woke up in a panic 4 hours later, because he didn’t wake up. He usually wakes up to eat. I woke him up, I fed him, projectile vomited again. I told Daniel, I said, “We got to go.” Went in the ED, sat there for 3 hours. Even though I told them he’s jaundice, he’s lethargic, projectile vomiting at 3 months of age, still had to sit there for 3 hours. Finally got back to a room. By then, between lack of sleep from working overnight and just seeing my son not be himself, I let loose on that doctor. I felt so bad, but I felt good at the same time because I got those labs. It was too late at that point, though.

The labs were so bad. The lab called and said they think they’re contaminated and wanted to redraw them. It was a 2-hour process before they got the labs and before they got the result. They came back just as bad as the first one. That’s when the liver team came and said that they want to get a head CT. I knew by then his heart rates were in the 50s and he was having this neural scream. I knew then he has a brain bleed, but I didn’t know the extent of it until the doctor came out of the reading room crying to tell me how bad the bleed was, and that we couldn’t send him to emergency surgery because his liver wasn’t clotting his blood. We had to send him to my unit, the PICU, to stabilize him before they could do surgery, which they didn’t think he would make it through.

Kerri Fitzgerald:

Wow. I’m so sorry that you had to go through that, your son had to go through that, your family. What did it feel like? You’re a mom, yes, but you also have all this medical knowledge, but you still couldn’t get people to believe you. What was that like?

Brittany Brinson:

Very frustrating and sometimes it felt demeaning, because it was like, I’m on your side. He’s yellow, there’s something not right. I’m not trying to tell you how to do your job. I’m just telling you what I see. This is what I’ve been seeing for months, that I know is not normal. If it’s not normal, give me bili lights then if you don’t want to give me the labs. Help me help him. I can’t put them in sunlight. There is no sunlight. But yes, very frustrating. Sometimes, as a Black mom, how do you not think that this is all race, that social determinant of healthcare? That’s a real thing, sadly. The disparities. Even though Corbin’s dad and myself both have…he has a Master’s, it is frustrating to say the least.

Kerri Fitzgerald:

Yeah, absolutely. There’s certainly data that reflects that unfortunately. You may receive different care based on how you look, and that’s really unfortunate and just not right.

Brittany Brinson:

No, it’s not.

Kerri Fitzgerald:

Again, I’m very sorry that your family had to endure that. What ultimately did the care team figure out that Corbin had?

Brittany Brinson:

After the CT scan showed that he had a brain bleed, it was then that the liver team, once we got to the unit, the PICU, that the liver team came, and talked to me. They asked if I was itchy during pregnancy. I was like, I absolutely was. I was taking several different medications to help with my liver numbers and with my itching. It was like a light bulb went off for them. They were like, we think he has this right then and there, just based on me saying that I was itchy. From there, they were like, we need to get these genetic labs done. It took a month. It was the longest month ever. But after reading about PFIC on Google, Dr. Google, I was like, I’m certain he has this. Despite having to wait a month, I knew already in my head that he had it. I don’t know. It was really weird. I didn’t know that there was a correlation, but that’s what the doctors believe.

Kerri Fitzgerald:

Wow, that’s so interesting.

Brittany Brinson:

I know.

Kerri Fitzgerald:

You mentioned PFIC. The full name for that is progressive familial intrahepatic cholestasis.

It’s, obviously as you mentioned, a liver genetic rare condition, correct?

Brittany Brinson:

Yes, ma’am.

Kerri Fitzgerald:

What has been some of the impacts of this condition that Corbin has experienced now?

Brittany Brinson:

Well, obviously, the scratching. Lots and lots of scratching, like to the point of bleeding. That’s what this condition is known for. Very high liver numbers. His normal is high, six to eight hundreds are his normal. Whereas, anyone else’s should be less than 100.

Jaundice eyes, high bilies, but normal for him. Lots of sleepless nights, because of the scratching and GI issues. Apparently, I learned at the time there were 6 different types of PFIC. He had type 4 of the 6 types. I can’t say if they found more since 4 years ago. Also, at that time there was only 2 other people in the world with type 4, so they were so happy that they got the diagnosis for us, but was still disappointed, because they were like, we don’t know anything about it. To this day, there’s still not much information out there about type 4, which is heartbreaking.

Kerri Fitzgerald:

Wow. It is. What does type 4 mean exactly for people who may not be aware of this condition at all?

Brittany Brinson:

Yes, ma’am. Each type for normal regular people like myself, I’ll call it type 4, but in the medical field it’s also known as TJP2 deficiency. It’s a type of protein that’s within the body and he’s deficient in it.

Kerri Fitzgerald:

Okay. Interesting. You said a couple people in the whole world have this type?

Brittany Brinson:

Yes. I believe more have sadly developed it since those years ago, but I still have yet to meet anyone with type 4.

Kerri Fitzgerald:

Wow. You mentioned some of the impacts, particularly the scratching. Is there anything that has helped Corbin alleviate any of those symptoms? Is there anything you can really do?

Brittany Brinson:

Aquaphor.

Kerri Fitzgerald:

Aquaphor.

Brittany Brinson:

We’re also on the newish liver med for TJP2 called Bylvay. That definitely helped decrease the amount of itching he was doing. I’ve learned over the years that if something’s bothering him, he really scratches a lot. Once you figure out what that issue is, like needing to go number two, until that happens, we’re going to be scratching. Or when he’s tired, hungry, all of the normal little people things, but then there’s other times where there seems to be no rhyme or reason and he’s just scratching away.

Kerri Fitzgerald:

Poor guy. I’m sorry to hear that.

Brittany Brinson:

I know.

Kerri Fitzgerald:

I want to talk a little bit more after you found out what Corbin was dealing with. What did you and your husband do to just help one another? Not even help Corbin, that’s something separate, but help yourselves get through obviously the trauma that you mentioned in the months leading up to finally someone taking you seriously and saying, “Yes, there is something going on.” But then now knowing your son has this condition and there’s going to be certain impacts that he’s going to live with.

Brittany Brinson:

Honestly, for a while, we just ran away from the issue. My husband went back to work, because the bills don’t stop even though you have a loved one in the hospital. I obviously wasn’t working. My job wasn’t going to let me. He was living on my unit, so that would’ve been hard. While my husband was at work, he obviously had me stay there because I know what’s going on. I know the lingo, I know the people, so I stayed at the bedside with little man. For a while until we got home, we realized we’ve never talked about what just happened. I think once we got home and adjusted to being at home, because you don’t realize once you’re discharged how much was done for you at the hospital.

People cooked, people cleaned. When he needs his meds, you can find a clean syringe and they’re doing it for you. Once you get home, you have to do everything, including now cleaning, and sanitizing syringes, and drawing up the meds, and hoping you’re not too tired to draw up the wrong amount. I think once we got home and adjusted to that, we slowly started talking to one another. We also did some counseling, just to help break down what we had just went through and was still going through.

Kerri Fitzgerald:

Yeah. You talked about getting home from the hospital. You had just gotten home from giving birth, right?

Brittany Brinson:

Exactly.

Kerri Fitzgerald:

You were only home for 3 months and then you’re back in the hospital. This is your first baby. That is just a whirlwind of things to have to go through.

Brittany Brinson:

How do you think I felt at the time? I’m still postpartum. My emotions were on level 10. I know my husband was like, “Somebody, please help her.”

Kerri Fitzgerald:

Yeah. No, yeah, you’re right. There’s not just Corbin, there’s you in the postpartum period and all of this. That’s just too much for a family to have to go through. What recommendations would you make to other parents or families who are going through something similar in terms of a medical journey with their child?

Brittany Brinson:

Definitely advocate. Don’t ever second guess. I obviously learned that the hard way. Your mom gut is there for a reason. Listen to it. If you don’t, bounce it off a loved one that you trust to say, hey, this is what’s going on. Before I go to the medical team or whoever, do you think I should follow through with it? Because 99% of the time, you know your loved one or yourself. You know when something’s not right. Follow through with it. If it comes of nothing, great. At the end of the day, you can walk away saying, okay, we check. Versus hoping and listening to these medical professionals who don’t know yourself or your loved one like you, and hoping that what they just told you is correct, and then to later find out that it wasn’t. Always just go above and beyond. That’s never going to hurt anything.

Kerri Fitzgerald:

Do you think going through this while also being a medical professional yourself, did this change the way you approach patients at all?

Brittany Brinson:

Oh, my gosh, yes. Because now it’s like when I have to place an IV or even if a mom is there and you could tell she’s tired, she hasn’t eaten breakfast, it’s 11:00 in the morning and she still hasn’t stepped outside the room. Now I’m advocating for them. “Mom, I’m right here. I’ve been where you are. Trust me.”

Kerri Fitzgerald:

You have to take care of yourself, right?

Brittany Brinson:

Yes. Because if you’re not taking care of yourself, you’re not helping them. You’re no good to them if you’re not any good to yourself. You have to be strong so that you can continue to help them stay strong. You need to sleep. Here’s an air mattress to put on top of these hard mattresses so that your back isn’t hurting the next morning. Just things like that. I definitely look at my patients as if they were Corbin. The parents, as if they were Daniel and I, just because I’ve been on that side and I know what it’s like. Definitely, if I could help in any way, even if it’s just here’s some washcloths and towels, go take a shower and don’t come out until you’ve actually showered. I’m right here, it’s okay kind of thing, because it definitely can be hard. Even if you know someone is there with your child, you still don’t want to walk away because you don’t know what’s going to happen. I try and give them that peace of mind as best I can.

Kerri Fitzgerald:

Absolutely. Yeah. Knowing, like you said, you’ve been on the other side of it now. Were there any organizations or support groups that you came across or found comfort and community in after you discovered Corbin’s diagnosis?

Brittany Brinson:

Yes, ma’am. The doctor on that week, once we found out what he had, told me that there’s a Facebook group called PFIC out there. That the founder’s daughter actually is treated at Children’s, too, so he put me in contact with her, which I was so grateful for, because I’m like, it’s already rare. The people who have his type are in Idaho, that’s not going to help me. It was so nice when he provided me her info. She was amazing, because the same week I contacted her, she had sent a care package in the mail for Corbin.

Kerri Fitzgerald:

Oh, that’s sweet.

Brittany Brinson:

I know. It was so nice. Then they also taught us about the PFIC annual meetings that they have in different locations. But once Corbin got stronger and we got clearance from his doctors, we finally got to go to one of the meetings. The first one was in Disney.

Just getting to meet other kids, granted not his age. But just seeing a community of people who’ve been through what you have gone through. Not to our extent, sadly, because to this day I can tell you for sure that Corbin is the only one that has survived a brain bleed. Our journey is a little different from everybody else’s, but it’s still nice to be around people who understand.

Kerri Fitzgerald:

Oh, yeah, I imagine. You could have some comfort, you could have some honest conversations with people. You mentioned going to different meetings, PFIC meetings. You recently spoke at the Cholestatic Liver Disease Summit about your family’s experience and also just the impact on mental health that this whole journey has, that aspect as well. Can you share a little bit about your experience at the summit?

Brittany Brinson:

Yes, ma’am. The Summit was so much fun, because it wasn’t just PFIC, it was also other liver conditions. It was nice to meet different families of not just PFIC and hear their stories. I was honored to have been able to be able to speak about our journey and bring light to Corbin’s story, so that hopefully other African-American families who may be thinking something’s wrong with their little one will have that courage to speak up and not cower away, like I felt like I did and accept what they were telling me. But then to just also know we’re no different from everybody, from anybody. We’re all equal. We just may be different colors, but we’re all going through something and we all deserve to have our voices heard. It was nice to be able to speak. Nerve-wracking, because there was a lot more people than usual, but a lot of fun. Great experience. Got to learn a lot. Not as much as that I was hoping for his type of PFIC, but we’re making strides and that’s all I care about.

Kerri Fitzgerald:

Absolutely. You said you wanted to be an example to people of really advocating for yourself, for your child, for your family. Would you also recommend that families find these different support groups or attend these different events? If so, why?

Brittany Brinson:

Absolutely. Because again, like-minded people, they’ve all been through something very similar to your situation and you’re able to bounce ideas off. My little guy is on one liver med, but someone else I met, their kid is on this liver med, and how it’s helped them so much better than when they were on what Corbin was on. Then it’s like, do I need to tell his liver doctor we need to switch? It really helps to have that. Or even just at this conference, I got to learn about therapy dogs and how they help their little ones during the night when they wake up and help them scratch. Or even when they’re at school, the little ones are able to scratch their feet on the dog versus themselves. It kind of helps keep their mind off of things, first always looking to some type of med. I was on a mission to try and figure out how I could get one for Corbin.

Kerri Fitzgerald:

Yeah. Oh, that would be awesome.

Brittany Brinson:

Yeah. In all, there’s something you’re going to walk away with that’s going to be of benefit for you and your family. I definitely recommend having people go to the conferences.

Kerri Fitzgerald:

Yeah, absolutely. At this particular conference, you spoke, you also mentioned being able to talk to other people who are dealing with this liver condition and other liver conditions. Are there any other just highlights or takeaways from the meeting that you want to mention?

Brittany Brinson:

Yes. Our first year we got to meet with Dr. Richard Thompson. He did a presentation on TJP2 deficiency and briefly spoke about the brain bleed as an issue. He talked about Corbin, but without saying his name. We got to meet him then. Since then, we’ve met him every year. We got to see him again this year, which was so much fun. Corbin’s favorite part was being given a liver, a stuffed liver. He loved it.

Kerri Fitzgerald:

That’s awesome. Like those little stuffies?

Brittany Brinson:

Yes.

Kerri Fitzgerald:

Yeah, that’s great.

Brittany Brinson:

Yes, but it was a liver. He loves that thing. It was just nice being able to see him be happy.

Kerri Fitzgerald:

Yeah. Absolutely. That’s sweet. You also are a co-founder of Moved by Their Compassion, an organization that supports mental health and overall wellbeing for healthcare workers and first responders. Can you tell me more about that and what inspired you to develop this community?

Brittany Brinson:

Yes, ma’am. My mom actually wanted to start this. I’ve just been her guiding light, because I’m in the medical field. When Corbin was in the hospital, he definitely had some really bad days where the healthcare team called us all to the room and said, “We don’t think he’s going to make it.” Just having family members come in and out to visit with him. But then he’ll randomly turn a corner and it’s like, okay, maybe we’re okay. But then to have that nurse after that kind of shift, come back the next day and do it all over again, like she didn’t just go through something traumatizing. My mom was like, I got to see firsthand what you deal with.

She’s like, I knew that things were bad from some of the stories that you would share with me, but I didn’t realize you have to go back to work and do it again. Not just nurses, doctors, but even just the people who would come and clean the room. The people who would make my lunch that my mom would always became friends with. By the time we were discharged, they knew, they saw her. She didn’t even have to put the order in. They already knew what she was going to order. From people, just from making food all the way up to the attendings and the surgeons, my mom was like, you don’t see anything to help them. During COVID, it was a huge thing, but now that it’s over, what happened? Where’s the help for you guys? Because that’s not right.

That’s why she created this nonprofit to help with the mental health of the providers. Even just the environmentalists, the cooks, everybody within that hospital system, just to help with their mindset. Because they may not be the ones caring for that patient, but they still see things, they still hear things, and everyone needs some kind of healthy outlet that’s not smoking or alcohol.

Kerri Fitzgerald:

Absolutely. Yeah. I mean, you’re dealing with so many different things. There’s burnout. A lot of healthcare providers deal with that. There’s shortages in certain areas of providers. Like you said, you’re dealing with people who are experiencing maybe one of the worst days of their life. Mental health can really be impacted by that. Like you said, you got to get up, and go back and do it the next day.

Brittany Brinson:

Yeah. My mom was like, at the time it was just you, but now you have a family. These nurses that have been caring for Corbin have families. How do they go home and function like they didn’t just see a patient die or almost die? How do they take care of their kids, and husbands, and house, and then come back and do it again? She’s like, I don’t know how you guys do it. After seeing that, she’s like, we have to do something.

Kerri Fitzgerald:

That’s beautiful. That’s amazing. What are some of the things that this nonprofit provides to people?

Brittany Brinson:

Yes, ma’am. My mom loves horses, so she was on a mission to find equine therapy. That one is actually pretty cool. About once to twice a month, we have equine therapy available free of cost. Everything we provide is free, because we know life enough is already hard, trying to find sitters, this and that, is already adding up. Let’s take one extra thing out of the picture by making it free, hoping that these healthcare providers, however you play a part within the hospital, will make time for themselves. By making it free, we’re hoping people will come out. Equine therapy about once to twice a month. We also have partnered with the Civic Garden Center. We’ve learned how to take things from the garden and make mocktails instead of alcoholic drinks.

We’ve also learned becoming one with nature, so walking in the grass without shoes, actually hugging a tree, and how it just really resets you. It’s not just a myth. Then we’ve also partnered with La Soupe in Cincinnati and Walnut Hills. We make a meal together and then we all get to eat it together. We learn how to chop up vegetables and stew beef, and bring it all together, and then be able to eat together, and just decompress as one. If we want to talk about work, we can. If we don’t, we don’t have to. But we’re all doing something that’s of benefit for our mental health.

Kerri Fitzgerald:

Right. That communal aspect of cooking a meal together, that’s bonding.

Brittany Brinson:

Yes. Yes. Those are just a couple things that we do. We also have yoga classes, journaling. We have someone to teach how to journal. Then we also do care packages. We just send out random care packages to the different hospitals in the tri-state, just to say, “Hey, we see you. COVID may be over, but we thank you.”

Kerri Fitzgerald:

Yeah. That’s a good reminded, like you said, that intensity of support for the healthcare community during COVID, while it was certainly important then, it’s no easier of a job right now. Thank you to you and your mom for what you’re doing.

Brittany Brinson:

Thank you.

Kerri Fitzgerald:

I think it’s really incredible work. I want to conclude our interview by asking…we ask the same question of all of our heroes. What would you tell your younger self, knowing what you know now?

Brittany Brinson:

To believe in yourself. Don’t second-guess. You only get one chance in this life, so live it as you see best.

Kerri Fitzgerald:

Awesome. That’s great advice. Well, Brittany, I want to thank you for sharing your story, for advocating for your son, and your family, and advocating for healthcare workers as well. You are just such an inspiration to so many families who are navigating a health journey, particularly a rare disease diagnosis and journey. Thank you again, and thank you for joining My Hero 360.

Brittany Brinson:

Thank you for having me. I really appreciate it.

–
Learn more about Moved by Their Compassion: 
https://movedbytheircompassion.org/  
Learn more about the Cholestatic Liver Disease Summit:  
www.liverdiseasesummit.org  
Learn more about PFIC Network: 
https://www.pfic.org/  
 
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