Claudia Ferreira

 
Claudia Ferreira McGibbon is Louis Ferreira's goddaughter. She kindly agreed to an interview with Ferreira Fest in order to share the extraordinary story of her daughter Sage. Claudia and her husband Callen are busy raising their three children in the extended Ferreira Family.
 
Louis was only a teenager when he was chosen to be Claudia's godfather. Here is his introduction:
 

 
 
LF – Hi friends! Meet my wonderful goddaughter Claudia Ferreira. I’ve had the privilege of knowing her since she was born. And she means a great deal to me. She is one of my favorite people in the world.
 
She is always, always pushing me to grow and to continue to evolve, and I am just so blown away by her own personal growth, to see her evolution as a, well, it’s really child to teenager, to young woman, to incredible mother of these beautiful children.

I love her so much, and my goddaughter and I are so close. And we’ve been through a lot together and she’s very special to me. She’s family.
 
I have so much respect and admiration for who she has become, having seen her journey through her entire life and I’m just so blessed that she’s in my life, I love her to death and she’s the most amazing mom, and I love her so much.
 
She’s just miraculous, stupendous and fantastic. I love her with all my heart, so enjoy this wonderful story.

 
 

And so, without much further ado, here is the interview with Claudia Ferreira!
 
 



FF – Hi Claudia, this is Bea from Ferreira Fest. We’re so happy to have you with us on Ferreira Fest 79. Let’s start with something really simple – who is Claudia? What gets you up in the morning? Is it coffee, tea, or an energy drink, or something else?

CF – Definitely coffee first thing in the morning. And my children.

FF – Coffee and the kids.

CF – Coffee and the kids, yes.

FF – That sounds perfect. Tell us a little bit about what your typical day might look like.

CF – My typical day… well, right now it’s summer holiday so it’s kind of a little bit scattered because the kids are off from school, but my typical day during school season is coffee in the morning and a work out and then prepping the kids to get to school. And my youngest is still at home with me so we do a lot of games and we look for activities to do around town. And then chores around the house and errands for my husband [and partner in our company "Healthy Living"], if he needs anything done, for his work, but otherwise I’m a stay-at-home parent. Which I’m happy to do that right now when my children are young.
 
FF – Wonderful. And, so, what is one of your favorite things to do with your family when you’re actually able to all be together?

CF – Well, during the summer time, it’s to just be at the beach. We all love swimming so, I think that’s one of our favorite things to, and places to be as far as the water and just being amongst nature, so that’s… or hiking and, yeah, we’re pretty simple like that.
 
 
FF – Yeah, the beach sounds great. Do you have any personal talents or passions that you pursue? Like when you have some free time, what do you like to do?

CF – You know what, I love love love reading. That’s something I spend some of my spare time doing. And lately I’ve taken up squash, and I like racket sports, tennis and squash, and, I don’t know, I’m not sure, I have many, many, many interests, so I think this would be a long question to answer. But I’ll start with just a couple of hobbies that I really like to do, which is reading and playing a couple of racket sports. And yoga, I do love how yoga makes me feel.

FF – So, Claudia, you’re a proud mom of three beautiful children, would you tell us a little bit more about them?
 
CF – We have three children. We have Hailey who’s eleven right now and Jove who’s eight and Sage is three. And they’re all very, very, very different from each other. It’s kind of neat. Their personality, look-wise and routine-wise. Like one’s a night hawk, one’s an early bird and one kind of sits in between, so they really are three very different children.

FF – Well, that’s great that you didn’t get three of the same! How boring would that be?!
 
CF – Good point.

FF – Now, let’s talk a little bit about Sage, your youngest. You told me that she was born with micro and macro lymphatic cystic malformation. Can you tell us what this means?

CF – We didn’t find out until late in the pregnancy. I was thirty-two weeks pregnant and my midwife at the time just realized there was something wrong so my care got transferred to an OB where I was able to be under medical supervision. And we weren’t quite certain what it was other than there was a mass that was showing up on the ultrasound.

And it wasn’t until after she was born and they were able to go in and kind of see what it was… what it is, it was mostly liquids to it, like the mass, is like a malformation, when she was being formed as a human it was just kind of a malformation, like it just grew that way and that’s why they call it a malformation.

And it was in her lymphatic system on her throat and neck and in her esophagus, which kind of posed some danger. And it was fairly large, we had to schedule a procedure. I can tell you a little bit more about that later.

FF – When she was born, how did she grow up? How did that affect a fairly complicated birth and pregnancy, as I would imagine? How did that affect her infancy and her development, growing up?

CF – Maybe I’ll just kind of tell you a little bit about her birthing, and then what happened the first few weeks of her life.
 
 

 
CF – She was born via an EXIT procedure which means, keep Sage hooked onto me via umbilical cord while they intubated her, just to make sure that she had room in her air passage because her micro and macro cystic malformation was all around her neck and her esophagus.

FF – Oh, okay.

CF – So they weren’t entirely sure that she would be able to breathe on her own.

FF – Gotcha.

CF – So, that’s why she had to go through that procedure. And during that procedure they, because it’s such a rare delivery, an EXIT procedure is pretty rare, we had a team of medical students come and so I specifically remember going into the operating room and seeing this crowd hover around me as I was being sedated. And the doctor said, “Everything’s fine, you’re going to be okay.”
 
And it was relatively quick. And then I saw her for, really briefly, I had just been sedated. So when I came around after the operation I don’t really remember, I wasn’t quite alert, but I briefly saw her for about fifteen seconds. It was very brief.
 
And then she got taken away under tunnel to Sick Kids which was across the street, but they have a connecting tunnel. So, because Sick Kids is specifically for children, even if you’re delivering, that’s how the kids get transported to immediate care. They get transferred via the tunnel.
 
So she went off and I stayed and recovered for almost three days. And she went straight to Sick Kids with my husband, he went with her. And they were trying to stabilize her vitals, she was struggling to keep her life for the first few days. The mass was just so big, it took so much, and she was little, she was born a couple of weeks early so she was small, she was considered at term because she was thirty-seven weeks, but she was six pounds and eight ounces, and then once they removed the mass she dropped down under six pounds. The mass was significant for her size.

So, you know, it was a lot, it was part of her and so her heart was feeding it, so everything was feeding it. Yeah, so it was, until she was able to kind of stabilize it was pretty scary the first few days.

Yeah, and then once I was a little bit recovered from it I was able to see her. But I wasn’t able to stay at Sick Kids because she was in intensive care.

So, I had to stay at the, they have this great place called the Ronald McDonald House. Yeah, it’s just for families who are, who live away from the hospital, over, I think it’s over forty kilometers. If you’re over forty kilometers, could be fifty, but it’s in between forty and fifty kilometers, you automatically get a right to a room, so that you can be near your kid. They have no curfews, nothing like that, you just walk in and out. And, just very much like a home away from home for families who are at a distance, whose kids are at Sick Kids for treatment.
And that was such a blessing because I hadn’t even thought about it, because it kind of happened quick, because we didn’t find out until week thirty-two.

And, there was basically no questions asked, we just got admitted, they were like, oh, where do you live? Sudbury? Okay, well, here you go. This is taking care of you so you can be with your kid. So it was a blessing to have that. Yeah, and so, the first few weeks of her life, she was getting stabilized and getting stronger and they were trying to get her to, you know, making sure she was feeding well, so that we can prep her for surgery.
 
FF – Wow, okay.
 
CF – So that she can live without, because she stayed intubated, they wouldn’t take out the breathing the breathing tube until right before the surgery.

FF – Right. Gotcha.
 
CF – So, she had to be in intensive care, and she was on lots of different medications to help stabilize her. And so, at sixteen days old, which is so young, but at sixteen days old she went in for surgery, and they removed as much of the mass as they could. Which was pretty well ninety percent of it, I think.
 
FF – Wow.
 
CF – Yeah. It was a successful surgery. It was really long. She was in the operating room for twelve hours.
 
FF – Oh my goodness.
 
CF – It was very, very, very long, for such a little person.
 
FF – Yeah. Oh my goodness.

CF – But it was a success. And she recovered pretty quickly and everything went really well from there. She stayed in intensive care for another week and a half, two weeks, and then from there we got transferred over to the Ear/ Nose/ Throat floor at Sick Kids, and that’s when I was able to stay in the room with her. So I left the Ronald McDonald House and I just stayed in the room with her for a week. Which was extremely uncomfortable.
 
FF – I’m sure!
 
CF – But doable. But nothing in comparison to what she went through.
 
FF – Yeah, oh, I’m sure, I’m sure.
 
CF – That was our experience in the hospital.
 
FF – Wow.

 

 
FF – And then, after that, she just grew up, and it got better as the scars healed okay and everything?
 
CF – Yeah, because she was cut from the top of her ear all the way down and to the other side of the bottom of her ear. So that was a really big incision and it healed very well. And she was able to latch on and breastfeed and she was from there able to live normally like all the other babies. She just looked a little different because she has the scarring, and she’s not centered. Like, she’s not symmetrical. She’s a little bit off symmetrical, but it’s very difficult to see.
 
FF – Yeah.
 
CF – I think, as my daughter I’m just used to seeing it. And, yeah, but so, what we have now is that we, through her first, she seemed to do really well, but when she gets sick, she had paralysis for a few months. I had to literally close her eyes and I have this goo, this eye goo to put on so it would stay shut.
 
FF – Right.
 
CF – And so she did have some stage paralysis for a few months and so that was a thing, for sure.
 
And there’s still some micro and macro lymphatic malformation cysts in there which are like little pockets of liquid.
 
She still has that as well. Still today. So it’s not like it’s a hundred percent cleared, but it wasn’t posing any trouble until she got really sick, then it inflamed a little bit. And then it goes down and then it inflames a little bit and then it goes down.

So it’s always a little bit of a concern when she got really sick, but recently, over the last, since last summer, so almost a year, we noticed it’s slowly growing.
 
And so we have inquired more about what we can do and we’ve since found a procedure called Bleomycin sclerotherapy where they use an injection to try to reduce the swelling. So that therapy will start in the Fall, in the early Fall.
 
It’s a chemotherapy drug that she’ll get injected with to reduce the swelling. So that she doesn’t have to have a scare, you know, we don’t have to have a scare every time, because we’re worried about her air passage. The doctors down at Sick Kids seem really confident, they’ve had great success with this, where she’ll be the fourth child to do this out of Sick Kids Toronto. So with this therapy we’re hoping that it will then reduce some of the bigger cystic malformations in there so that when she does get really sick, because she’s bound to get chicken pox and other illnesses that come with the kids home from school and down and out for a while, so we’re hoping to stay ahead of it with doing this therapy system. So that, so we don’t have those scares, with her air passage.
 
So that’s what we deal with today. But her paralysis is gone.
 
FF – I’m glad.
 
CF – Because she’s not symmetrical, she struggles more with her speech, because her jaw is a little off-centered, so she really has to enunciate things. And that’s something that she’s working with. It’s not a thing for her though, it’s just kind of part of who she is, you know?
 
FF – Right. Well, at that age, kids are so adaptable and so quickly able to learn new things. And just find different ways of wiring themselves, of dealing with what it is that they have, and so she’s got everything going for her in that respect. And she’s a beautiful girl, she’s an absolutely beautiful girl.
 
CF – She is a great, great, great kid. She’s funny and she’s well-tempered and she’s a lot of fun.
 
FF – And at her young age, she has already taught a whole bunch of medical students. How exciting is that? Some of us get really old and never get to teach medical students, so that’s something that she can totally brag about in Show and Tell at some point.
 
 
 
FF – Having gone through all of this, what advice do you have for parents who might be facing a similar situation to what you were in?
 
CF – I think at this point I would say to never to give up looking for answers. There’s incredible things out there and we, for example, we just found out about this through research and research and research. My husband was really great with that. You know, being persistent on trying to get, like at one point we thought maybe if there’s no one here in Canada… we eventually found somebody, after asking a gazillion people, doctors… you just have to make sure you’re diligent about making sure you’re satisfied with the answers. And not just taking everybody’s word for everything.
 
Like making sure you’re comfortable, you thoroughly understand everything and you thoroughly have done your research and that you’re making confident choices about what kind of plan or procedure you’re going to take.
 
And then do it. So, I would say to just, you know…
 
FF – And that’s so important to do your homework, especially if it’s not something that is a run of the mill thing that happens ten thousand times a day. But if you’re in a situation where this is not a very common occurrence, then it’s so important for the parents to stay involved, and do their part because everything that you do, and every step the child takes will benefit another child that comes along at a later time. Because, as you make those connections, you and your doctors and the therapists that you might be with, all of these connections, they have
been made, and they are there for other people to use later on. Which is what’s so exciting about that, that we can do this so much easier today, now that we have the internet and social media, and we’re able to communicate with each other across the world so much more easily when we’re in situations like that.
 
FF – Well, as we get towards the end here, Louis is your godfather, so, what did that mean to you, growing up?
 
CF – Growing up? Well, he was always someone I revered for sure, like he was always lots of fun, and he was always somebody I was able to talk to, which was awesome, coming from a family that was very traditional in the sense that, I think now they’ve evolved into, that we were able to talk more openly, but also growing up it was really tough for them. So having had my godfather there while I was growing up meant a huge, huge deal for myself and my cousins and my brother because I think he was, he’s a cool guy. A guy we all wanted to talk to and hang out with and he’s fun and he’s great and we always have great conversations. And I love him, he’s a great, great, great guy.
 
FF – Wonderful.
 
CF – Yeah.

FF – So, now, if you could describe Louis in four words, what would they be?
 
CF – They would be… I know what they’d be. They’d be fun, fantastic, and too sexy! He’ll like that one, he’ll like that one.
 
FF – That counts as one. That counts as one. You got one more.
 
CF – I’d say he’s a charming man. I think he’s a charming man.
 
FF – Fabulous! Thank you, those are great words, Claudia, thank you so much!
 
CF – Yeah, no problem.
 
FF – So now, if people wanted to know more about Sage’s particular condition, micro and macro lymphatic cystic malformation, is there a place that you can recommend, that they can go to? A website or an organization? And how can we help?
 
CF – So, just for information purposes, the Nationwide Hospital in Columbus, Ohio has the most research done on the specific condition. They have a lot of information if people want to know what it’s about. That would be a really good website to go to just to inform yourself on what it is.
 
FF – Wonderful. We’re at the end here, Claudia. Thank you so much for your time.
 
CF – Thank you for taking the time as well, to find out about Sage.
 
FF – Yeah, this was incredibly fascinating and informative, and a topic that I, and many other people obviously won’t know that much about, so thank you so much for sharing your story, and how it impacted your life, and I hope you have a wonderful evening and a great rest of the summer, and we’ll talk to you soon.
 
CF – Thank you, you too.
 
FF – Okay, bye-bye.
 
CF – Bye.
 
 
Thanks to Casey for all the transcripts!

In accordance with the Children's Online Privacy Protection Rule ("COPPA") we have obtained the parents' express permission to post photos of their children as well as their stories at louisferreira.org. All photos © by Claudia Ferreira.
 
 
 

 
Claudia and her godfather "Doin' the Louis"
...fantaaaastic...
 
 
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