From Diagnosis to Advocacy: The Brave Little Hearts South Africa Story

What does it take to recognize the early signs of congenital heart defects (CHD) in a newborn? In this emotionally charged episode of "Heart to Heart with Anna," we welcome Raadhiyah Matthews, who recounts her harrowing journey with her daughter Thaakirah. From the initial dismissals by medical professionals to the profound struggles with feeding and gaining weight, Raadhiyah's candid story captures the relentless love and anxiety only a mother can understand. Her tireless advocacy led her to establish Brave Little Hearts South Africa, a beacon of hope for parents facing similar battles.

We also hear about Thaakirah's incredibly quick diagnosis at Red Cross Memorial Children's Hospital, leading to immediate surgery and a rollercoaster of emotions. The stakes heighten as Raadhiyah describes the complications, including a severe brain infection that resulted in emergency neurosurgery and temporary paralysis. Raadhiyah's strength and resilience is laid bare, offering listeners a raw, unfiltered look into the challenges of navigating a child's severe health crisis.

Cultural stigmas and the critical importance of pulse oximetry in early CHD detection form another essential part of our discussion. We explore the efforts of advocating for legislative changes to make this life-saving test mandatory, sharing personal stories that highlight ongoing struggles and successes. Concluding with a heartfelt tribute to Fareed Matthews, whose enduring legacy continues to inspire and support families through Brave Little Hearts South Africa, this episode is a deeply moving testament to the power of parental love, advocacy, and community in the face of congenital heart defects.

Thank you to everyone who has helped HUG in creating our podcasts and other resources. Visit https;//www.heartsunitetheglobe.com to donate or join us!

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• 22:58 (Cont.) Segment 2
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Transcript

Raadhiyah Matthews: [00:00:00] As a mom, I knew something was wrong. I went back almost every day and never gave up. It's called mother's intuition or gut instinct. It will never fail you. 

Anna Jaworski: Welcome to Heart to Heart with Anna. I am Anna Jaworski and the mother of an adult with a single ventricle heart. That's the reason I am the host of your program. Today's guest is Raadhiyah Matthews. Raadhiyah's daughter, Thaakirah, was born with double outlet right ventricle,

transposition of the great arteries, or TGA, pulmonary stenosis, and ventricular septal defect, or VSD. Thaakirah was not diagnosed until she was three months of age, and at the time of her diagnosis, her oxygen saturation was 55%. As a result of her experiences trying to get proper diagnoses and treatment for her daughter, Raadhiyah and her husband, Fareed Matthews, founded Brave Little Hearts South Africa in Cape Town in 2014. Brave Little [00:01:00] Hearts South Africa has grown tremendously. It has provided life-saving equipment for hospitals in Africa, but more importantly, it has helped spread awareness about congenital heart defects through numerous programs and projects, including an RX Radio SA, (or South Africa), which her children are involved with.

Raadhiyah has even traveled to the United States to the 8th World Congress to have a presence in the Global Village with Global Arch. So welcome to Heart to Heart with Anna, Raadhiyah Matthews. 

Raadhiyah Matthews: Thank you for having me, Anna.

Anna Jaworski: I'm so happy to have you on the program. This is way overdue, 

Let's start by talking about your sweet daughter, Thaakirah, and when she was born, and after she was born, that you first started to suspect that maybe something wasn't quite right. 

Raadhiyah Matthews: I had a normal pregnancy.

No concerns raised at my prenatal checkups. I had a natural birth with no complications [00:02:00] and everything seemed fine. I gave birth in a semi-private hospital and we had the choice of staying an extra two days. Because I had three younger children at home, I stayed the extra days to rest. Nothing seemed out of the ordinary during those three days.

The nurses came regularly to check on us and help me with the breastfeeding and bathing and basically show me how to care for my newborn. Three days later, after a full examination, which included listening to her heart, the hospital discharged us with a good bill of health. My concerns only arose after we got home.

The first thing that bothered me was her color. The inside of her mouth, her tongue, and her lips were dark blue. The bottom half of her body and under her feet was an even darker purple.

Anna Jaworski: Oh my gosh, you already had three healthy children, and that must have been terrifying.

Raadhiyah Matthews: Yeah, I did not know what was going on. 

Anna Jaworski: I wouldn't either. Oh, my gosh. Okay, I'm sorry for interrupting, but [00:03:00] that was startling.

Raadhiyah Matthews: Yeah.

Every time I pressed on her skin, it was snow white and took a long time to turn back to its original color. After being discharged from hospital, we had to go back a few days later for a checkup. I mentioned Thaakirah's color to the nurses at this checkup, but my concerns were dismissed. At this visit, nurses also listened to Thaakirah's heart, but they obviously found nothing out of the ordinary.

A few days later, I noticed that her breathing did not look normal. It looked as if she was struggling to breathe. Her chest rose and sank quite significantly as she breathed. Thaakirah also had trouble gaining weight and was not feeding well. She would suck for a bit then go to sleep. I also had to change her bedding and clothes often because she sweat a lot.

Yet, at the same time, she was ice cold even though Thaakirah was born in December, which is the heart of the summer season in South Africa. I am not anxious by nature, but nothing about Thaakirah seemed [00:04:00] right. My gut instinct told me that something was seriously wrong with her.

Anna Jaworski: Absolutely. You saw the color was wrong.

She's struggling to breathe. She's sweating. And just like me, the medical professionals dismissed you. I had the exact same thing happen, except my baby didn't sweat. And my baby was born in the heat of the summer in Texas. And my baby's feet were never blue 'cause my baby had a lot of holes.

Thaakirah had a VSD. My baby had a VSD and ASD and multiple holes. I guess that's what prevented her from looking quite so blue, but, wow, that's, so scary that you already had three children who were heart healthy. You knew what your baby should look like. I also had tremendous problems feeding.

My baby kept falling asleep on me and I would have to wake her up to get her to feed. And then she would just fall asleep on me again. Did you have that kind of situation as well? [00:05:00] 

Raadhiyah Matthews: I did, and yeah, it was, just weird. She had no energy. 

Anna Jaworski: Right. Right. And my baby never woke up crying to eat. Did Thaakirah wake up crying to eat?

Raadhiyah Matthews: It's true. Actually, now that you mention it. That is true. She never cried to eat. 

Anna Jaworski: My baby never cried with a wet diaper either. And my firstborn sure did. She just didn't cry. And everybody said to me, "Oh, you have such a precious baby. You're so lucky. She doesn't cry." And I said, "No! This is not normal for the baby not to cry."

That's not normal. And I felt like I was force feeding my baby. I even set an alarm every three hours because she wasn't, yeah, she wasn't waking up. See? 

Raadhiyah Matthews: I forgot actually. I remember now because my mom stayed over and I set my alarm. It was set every hour. I had to wake up to feed her [00:06:00] every single hour.

That's what one of the lactating consultants told me. I completely forgot about that. 

Anna Jaworski: Oh, wow. Every single hour. My lactation consultant told me. Yeah, they told me to do it every three hours. I can't imagine doing it every hour. You must have been completely exhausted. Yeah, there is no sleeping. Especially since we're anxious because we know something's wrong.

So your mom was staying with you. How long did your mom stay with you? 

Raadhiyah Matthews: My mom stayed with me for quite a while. You're taking me way back. 

Anna Jaworski: I know.

Raadhiyah Matthews: Yeah, she actually moved in for a bit, because it was quite tough looking after Thaakirah on my own because of waking up in the middle of the night trying to feed her. 

Anna Jaworski: Sure. Sure. 

Raadhiyah Matthews: I was struggling to feed, and I had to get up with the alarm. I had the other three kids and she helped me look after them or they stayed by [00:07:00] her just so that I could focus on Thaakirah.

Anna Jaworski: Okay. So I'm dying to know... your mother was there. Your mother has had lots of experience with babies, I'm sure. What did she say about Thaakirah?

Raadhiyah Matthews: She also said something was not right because she worked also at a cerebral palsy school. 

Anna Jaworski: Oh, okay. 

Raadhiyah Matthews: She also was around kids that are sort of like not normal and she said something was definitely wrong with her, but we just couldn't put our finger on what it was.

It was just "something" at the time. 

Anna Jaworski: Right. I totally understand . So now, with the benefit of hindsight, what advice would you give yourself back then based on what you know today? And to be fair, things are different today because you've been raising awareness, but with the benefit of hindsight, what would you say to yourself back then?

Raadhiyah Matthews: Looking back, I think to myself, 'Did all these things that I was told not seem strange?' Yes, it did. [00:08:00] But I trusted the people that were giving me their advice. Despite everything that happened, if it had not happened, we would not be where we are today. I would not have had the knowledge that I have about CHD and Brave Little Hearts of Africa would probably not be in existence because it's through Thaakirah's bravery and courage that Brave Little Hearts of Africa was formed.

Having said that, the advice I would give other parents when in a similar situation is never give up. As a mom, I knew something was wrong. I went back almost every day and never gave up. It's called mother's intuition or gut instinct. It will never fail you. We as mothers know our babies.

We have the best interest at heart. We are their voice. We can see their pain and the struggle. I don't think that I can go back and tell myself anything different. The problem was not with me. The problem was with the medical staff. They just did not know what they were looking at. Hence, it did not raise any alarm bells.

And because of what we went [00:09:00] through, I can now raise awareness and hopefully educate parents, caregivers, and medical professionals about CHD. CHD in Cape Town, at least, now has a voice. 

Anna Jaworski: I love that answer. Oh my goodness. I love that answer. Yes. 

Raadhiyah Matthews: You say "in hindsight..." I would not be where I am today had that not happened, 

Anna Jaworski: Right. I'm so much like you. My husband was a nurse at our local hospital. And like you, I just trusted the medical professionals, the lactation consultants and the doctors who told me, "Don't compare your second child to your first child" and my baby came three weeks early so, "She still think she's inside of me." And I mean, they had all of these excuses for why she was the way she was, but I knew better. I knew something was wrong, so when I think of that question for myself, I think, 'Well, go to another hospital, dummy.'[00:10:00] 

Why didn't I go to another hospital? But I didn't because this is the biggest hospital for a hundred miles in diameter. And this is the hospital my husband worked at. So surely no other hospital was going to give me the care that the hospital where my husband worked would give me. But like you said, had I not struggled like we did, then I wouldn't be where I am today.

Raadhiyah Matthews: A hundred percent. 

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Hearts Unite the Globe Message: Heart to Heart with Anna is a presentation of Hearts Unite the Globe and is part of the HUG Podcast Network. Hearts Unite the Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to uplift, empower, and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at wwwcongenitalheartdefects.com for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors, and much, much more.

Segment 2

Anna Jaworski: In the first segment, Raadhiyah, we learned that nobody took you seriously when you said something was wrong with Thaakirah, but you finally did get a proper diagnosis.

So take us through what happened for you to finally get a proper diagnosis and how long it took for them to do something to try and help her. 

Raadhiyah Matthews: When Thaakirah was three months old, she developed diarrhea. Once again, we went to the local clinic. This time I was told that she was too young to receive medication, and I just needed to see [00:11:00] it through.

Not being satisfied with that answer, I went to our local pharmacist, who took one look at her, and said that we need to take her to hospital immediately, because she did not look well. The Children's Hospital in Cape Town is a specialized children's hospital that caters for all nine provinces in South Africa, as well as the whole of Africa.

And it is not that easily accessible without a referral letter from your clinic, doctor or referring hospital. And because nobody thought that Thaakirah was unwell, we would not have that referral letter. But the pharmacist insisted that I take her to the hospital and he would not take 'no' for an answer.

That was the best advice that anyone had given me thus far, and it was life changing. 

Anna Jaworski: Wow. 

Raadhiyah Matthews: Getting a diagnosis at Red Cross Memorial Children's Hospital was not that difficult. The doctor on duty took one look at Thaakirah and said that she was pretty sure that Thaakirah had a heart condition and that we were not going home.

Five seconds was all it took. And my whole world suddenly turned upside down. [00:12:00] Everything moved at incredible speed. There were doctors, nurses, specialists everywhere. It was a time of mixed emotions for me. Happy that finally I had a diagnosis. Confused and shocked because I was told that the structure of my baby's heart was not the way that it was supposed to be and that it was a miracle that she lived undiagnosed for three months.

We were admitted immediately and scheduled for surgery as soon as her diarrhea cleared up. I was told that they were going to insert a cardiac shunt to help oxygenate her blood as her SATs on admission was 55 percent. Normal saturations are 95 to 100. That was the first time that I heard about CHD.

Nothing the doctor said made sense. Even though they explained everything to me. They used big words, small words, drew pictures, but none of it made sense. My brain could not wrap itself around what was happening. 

Anna Jaworski: Yeah. 

Raadhiyah Matthews: After they inserted the shunt, I thought that everything was going [00:13:00] to be fine. We were going to go home, live a normal life and come back when she was bigger.

But that was when our CHD journey just began. I learned there was no quick fix. The shunt was temporary. It was to tide her over until she could have a corrective surgery. Reality of what it is like living with CHD set in. I learned what shade of blue was acceptable for Thaakirah. I familiarized myself with the sound and rhythm of her heart so that I knew what her normal was.

I could tell when she was tired and everything I knew and saw in her before diagnosis was not scary to me anymore. Because I knew why and what it was, I had answers, and that made all the difference. 

Anna Jaworski: Oh my gosh, I can totally relate to everything you just said, Raadhiyah, because just like you, when we finally did get that diagnosis, they rushed us by ambulance. That's how old I am. My daughter just turned 30. 

Raadhiyah Matthews: Oh, no way. 

Anna Jaworski: Yeah. So we didn't have a [00:14:00] helicopter from our hospital. So we rushed by ambulance three hours away to a different hospital where they could treat her. 

Raadhiyah Matthews: Yeah, 

Anna Jaworski: I remember tears of joy and fear. They were mixed. I had such a multitude of emotions that I was going through because I had been saying for two months something was wrong. For you, it was three (months). I can't even imagine. Finally, when there was a diagnosis, it was so horrifying that I was terrified. And I think you're in shock. You're told stuff and we're not stupid women. We're smart women. Yeah. But I think we just go into shock and it's hard to comprehend anything that is said to us.

Raadhiyah Matthews: 100 percent because I remember when Fareed was at work and he phoned me to find out what is happening with Thaakkirah because I said she's sick through the course of the day. And I said, they say her heart is not right. And he's like, "What?" And I'm saying, "Yes, there's something wrong with her heart."

And he couldn't [00:15:00] understand and I couldn't explain. And he was rushing to get to hospital because no one could quite fathom the idea that a baby's heart could not be right. 

Anna Jaworski: Exactly. And you had three healthy children. So it's not as though you expected this because one of your previous children had it.

That's what I think makes it such a shock for me too, is that I had a heart-healthy child. I knew what it was like to be a mother to a heart-healthy child, but to all of a sudden have a child with a heart defect... And to my knowledge, nobody in my family previously had a child with a heart defect. So it feels like it comes out of nowhere.

Raadhiyah Matthews: Yeah 

Anna Jaworski: So scary. 

Raadhiyah Matthews: Nobody in my family has a child with a heart defect either, as far as I know. 

Anna Jaworski: Yeah. But we know 2013, something else happened when Thaakirah was supposed to have corrective surgery. Tell us what happened then. 

Raadhiyah Matthews: When Thaakirah was 2 years old, [00:16:00] she finally got ready for her corrective surgery.

We went to hospital and had our echo and necessity checks done and surgery was scheduled. That night, however, when we got home, Thaakirah took a turn for the worse. She tried to smile, but only one side of her face moved. I rushed her back to Red Cross Hospital. By the next morning, she not only had facial paralysis, but paralysis on the one side of her body as well.

An MRI scan was done, and neurologists found that she had an infection that traveled in her bloodstream, passing through her heart chambers and settling in her brain. Thaakirah had two abscesses growing in her brain. One on the surface of her brain, which was easy to treat, and one in the center of her brain stem, deep inside her brain, which was much more serious.

Treatment with antibiotics was not really an option as time was not on her side. Neurosurgeons made the decision to remove the abscess on the surface of her brain. They did not want to operate in her brainstem as it is only [00:17:00] 2mm wide and all the nerve fibers came together there. 

Anna Jaworski: Oh my gosh. 

Raadhiyah Matthews: But the abscess in her brainstem was moving at a very fast rate and crushing everything in its path and with each passing hour her paralysis got worse.

She had already lost her eyesight. Neurosurgeons approached my husband and myself and told us that they needed to operate immediately because the abscess in the brainstem was growing too fast and it would eventually stop her from breathing. This was very difficult. 

Anna Jaworski: Gosh. Oh, my gosh. Raadhiyah, hold on, honey. You're going way too fast. 

Raadhiyah Matthews: Sorry

Anna Jaworski: No, it's just, this is so stunning. You are the first mother to tell me of something of this magnitude happening completely unheart-related, I would imagine, and so horrifying. I mean, this could have stolen her in a moment's notice. 

Raadhiyah Matthews: Yes, they said because the abscess was [00:18:00] in the center of her brainstem, and all the fibers came together there, and it was the center of her breathing and her movement and everything, and this abscess, as it grew bigger, it was crushing the nerve fibers around it, and that is what we could see. I saw her face, the paralysis, and then within the next hour, her one arm didn't move.

And then an hour later, her leg didn't move. And then it was the other side of her body, the other arm and the other leg. As the abscess grew and crushed. And he said it would eventually crush everything, and she'd just stopped breathing just like that--instantly. 

Anna Jaworski: And two millimeters. You said there was two millimeters in the brainstem where all of this was happening.

Raadhiyah Matthews: Yes. 

Anna Jaworski: How would you go in there and operate? You wouldn't be able to. What did they do? How did they fix this? 

Raadhiyah Matthews: The neurosurgeons performed a very risky seriotactic neuronavigation guided aspiration of the abscess. That [00:19:00] operation was a first for Red Cross War Memorial Children's Hospital, performed on a child of that age, and the risk was paralysis or not waking up after surgery.

The operation was a success. Thaakirah did, however, have to re-learn how to sit, walk, eat, etc. But with regular physio, it all came back. 

Anna Jaworski: So she had been developing normally before then? The shunt had worked well enough that she was eating, and she was developing and she was walking and talking and moving normally before the surgery? 

Raadhiyah Matthews: She was... not developing normally, but developing. She was walking, talking, eating, sitting, crawling. She was delayed. 

Anna Jaworski: Sure. Of course, she was delayed, 

Raadhiyah Matthews: She was just delayed. Yeah. 

Anna Jaworski: Okay. So she had that three months where nothing was going on because her body was just in survival mode. So it would be really miraculous if there was [00:20:00] no developmental delays after that.

Of course, she was going to have some developmental delays, but she made it to the age of two and she was going through some of those milestones. But then to be in the hospital as a two-year-old where her arm is paralyzed, she's gone blind. Yeah, I would imagine it would take some time for all of that to come back.

So they did this revolutionary surgery on her. The first time it's been done on a child this young... you must have been completely terrified. 

Raadhiyah Matthews: We were because the neurosurgeon, he said it was a very, very, almost like, cotton-thin needle that he needed. The whole operation was very risky because he said his hand, even if it just flinched a millimeter, a micro millimeter, it could touch something that is [00:21:00] irreversible for her. So it was a long little pipe with a long needle that went through because he explained that the longer the needle, if his hand did move by the time it got to where it needed to be, there wouldn't be any movement because of the time travel through this needle.

So it was a very long needle that he needed in order to get into the center of her brainstem. That is how they did it. That was that stereotactic neuro navigation guided aspiration. 

Anna Jaworski: I've never heard of that. That's just so scary, but obviously it did work, but that's not the end of your rollercoaster ride.

It continued because in 2014, then she had two bouts of heart failure. So talk to us about when she was finally able to have her heart surgery and where she had it. 

Raadhiyah Matthews: A year later, Thaakirah was scheduled to have her open heart surgery. Thaakirah had a [00:22:00] very complex heart condition. She had double outlet right ventricle, transposition of the great arteries, pulmonary stenosis, and ventricular septal defect, which is classed as one in five hundred thousand..

And because of this complexity of her heart, South Africa did not have a surgeon who could perform this corrective surgery. However, in 2013, a visiting cardiothoracic surgeon from France, Dr. Pascal Verrier, from the Necker Hospital for Sick Children, offered to do Thaakirah's surgery. However, at the time, when he came down, we, as a family, found that the surgery was too complicated and it was postponed.

It was immediately after that, that Thaakirah developed the brain abscesses and in the interim, while Thaakirah was recovering from the neurosurgery, a resident cardiothoracic surgeon from Red Cross War Memorial Children's Hospital, Dr. Andre Brooks, went to France to train under Dr. Pascal on how to perform the Nikaidoh-Bex procedure for [00:23:00] Thaakirah.

In 2014, when Thaakirah was three years old, we were told that a corrective surgery had been scheduled. This time, we were prepared for the surgery. We had been down this road before.

The 12-hour open-heart surgery was performed by Dr. Andre Brooks and was a first for South Africa again at the Red Cross War Memorial Children's Hospital in Cape Town, and three weeks later, Thaakirah was discharged. 

Anna Jaworski: Wow. Oh, my gosh. So this is the first time they performed a surgery of this complication on a child so small. And you had to have a surgeon from another country come over... that is just amazing that it all came together and how fascinating they talked about doing a surgery earlier, but you and Fareed for some reason felt, 'no, not yet.' And then she had the brain abscesses. It's almost as though your parental intuition knew something else needed to be [00:24:00] taken care of first.

Raadhiyah Matthews: Yes. It was actually the day that the French surgeon was here and he did the echo and everything on Thaakirah. It was that evening that I was speaking about earlier that we went home and the facial paralysis happened. 

Anna Jaworski: Wow. The same day. 

Raadhiyah Matthews: Yeah. 

Anna Jaworski: Oh, my goodness. You have certainly had a rollercoaster ride with this young lady.

It is just amazing. And then for this other doctor to come. And do the surgery. What I have to imagine is that her cardiothoracic team was still in preparations for her to have this surgery. They knew she needed it. And they also knew that time was of the essence for her to have this surgery.

Raadhiyah Matthews: Yes. They were researching and doing what they needed to do to give us the best help that we could get.

Hearts Unite the Globe Disclaimer: This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. The opinions expressed in the podcast are not those of Hearts Unite the Globe, but of the Hosts and Guests and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.

Rejoiner: You are listening to Heart to Heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Jaworski at Anna@HearttoHeartwithAnna.com. That's Anna@HearttoHeartwithAnna.com. Now back to Heart to Heart with Anna. 

Segment 3

Anna Jaworski: You and your husband were founders of Brave Little Hearts South [00:25:00] Africa. So please tell us why you started the non-governmental organization. 

Raadhiyah Matthews: Brave Little Hearts South Africa was founded by Fareed and myself and has two focuses.

One is the support to parents, and the other is lobbying and policy advocacy. The support to parents because often parents feel alone. When their child gets diagnosed, they get told of this unheard of disease or defect. They get told that their baby needs surgery. There's also a stigma attached to CHD and often parents would rather keep quiet and not tell the family.

We would like to empower the parents with the knowledge which would give them the courage to have a voice and speak out about CHD and be their child's advocate until their child is old enough to advocate for themselves. 

Policy change is also very important. An easy test, pulse oximetry, two minutes, non-invasive, is all that is needed to save a life. Three months of suffering could have been [00:26:00] avoided had a pulse oximetry test been done on Thaakirah after birth before being discharged from hospital.

Anna Jaworski: I know the same is true for my baby. If they would have put a pulse oximeter probe on her little finger or on her little toe, we would have known, 'Hmm, 85 percent something's not right there. 85%. What's going on there?' I, too, have been a huge proponent for pulse oximetry and went to my state to lobby that it be required for all babies being discharged from hospital.

Now, for home births, it's not required, but at least for those in the hospital, that is something that is now required by the state of Texas. Did you get that legislation passed in Africa? 

Raadhiyah Matthews: We have not yet, but I think there's about two or three hospitals that are doing it, but it's not a law as yet.

No. 

Anna Jaworski: Right. But I'm so glad that you're out there and you're a proponent [00:27:00] for that very important type of legislation. It can save a life, as you know. That, in and of itself, is amazing that you're working toward that policy change. 

Raadhiyah Matthews: That is, I think, very important. 

Anna Jaworski: Yes.

I found it interesting that you said there was a stigma attached to having a child with a heart defect. So I hate to ask this question, but I'm going to because not everybody knows the answer. Does that mean that most children in Africa go home and even though their parents may know something is wrong, because they don't want to admit that something's wrong or for it to appear that something could be wrong with their child, that the children just pass away at home?

Raadhiyah Matthews: That is true. It's more in the rural areas where that happens because their culture is different. They believe in ancestors and, for the [00:28:00] husband and the wife, if there's something wrong with the baby, it is the wife's fault.

It's always the wife's fault. It's not anything to do with the husband. Then the family shuns the mother because of what she's done to the child. So they'd rather keep quiet and not say anything. It's a ripple effect because then they don't say anything. They don't go for the checkups.

They'd rather not have that being ostracized by the family, and then basically getting thrown away from the family, if I'm making sense. 

Anna Jaworski: It does make sense, but I'm ready to start crying. No, that is harsh, but that is a cultural phenomenon that happens. And that's where your education can make all the difference in the world because by you saying, "Well, I had a daughter with this problem, but we had surgery and now [00:29:00] she's okay...." and we know it's not a perfect fix, but she has been able to grow up to be a teenager, right? Isn't she a teenager now? 

Raadhiyah Matthews: Yes. She's a teen. 

Anna Jaworski: Oh my goodness, time has gone so fast. I'm just ready to cry because in America, that might have been the case generations ago.

It's just tragic, but it is what it is. 

Raadhiyah Matthews: It's very real. 

Anna Jaworski: It's very real. I remember when we were with Global Arch and they were telling us the statistics of the children with congenital heart defects around the globe who pass away in infancy.

And it was something like 90%. And that's part of the reason why. Because if there is shame or if there is shunning, ostracization, or blame that goes along with a condition that is not [00:30:00] the mother's fault or the father's fault, it is just something that happens. My doctor called it 'a fluke of nature.'

I did not like that expression, and I don't believe that's true. I think there is something that goes on in the body, and there is a problem, but I don't consider it a fluke of nature. And I have a feeling someday we will know what it is that causes it. Yeah. But the problem is that there are over 42 different congenital heart defects.

And as you and I know, no two children look exactly alike. No two children present exactly alike. One will have a VSD that's two millimeters and another will have a VSD that's two millimeters in a different place. Part of that is what makes it so difficult to treat, but it's not because the mother did something wrong or the father did something wrong.

It's just because that's what happened in the development of the heart. And we need to get away from blaming and move toward treating. And that's what Brave [00:31:00] Little Hearts South Africa is doing just by saying, "Let's do pulse oximetry" and just by raising awareness and you saying, "I have a daughter" and not trying to hide her...

Raadhiyah Matthews: Yes. 

Anna Jaworski: from the world. 

Raadhiyah Matthews: That's the big thing, not to hide and speak out. 

Anna Jaworski: Absolutely.

Raadhiyah, it was so hard for me to meet you last year in Washington, D. C. without your husband, because I had been friends with your husband on Facebook for over a decade, and I just want you to know how sorry I am that your husband passed away in 2021 from COVID. 

Raadhiyah Matthews: Thank you. 

Anna Jaworski: I'm sorry. It's so hard for us to lose the ones that we love. And I so looked forward to meeting your husband. I just knew we would meet each other someday and [00:32:00] we had so many conversations about heart defects and how to raise awareness. I know he would have loved to have been at that conference with us last year.

So I'm glad that we had a chance to memorialize him at the conference. But can you tell me what his passing has meant for Brave Little Hearts South Africa?

Raadhiyah Matthews: Fareed's passing was a very sad moment for Brave Little Hearts South Africa, as well as the CHD community as a whole.

His contribution to CHD will be dearly missed. Fareed impacted the lives of many families affected by CHD worldwide. Fareed's passing resulted in a temporary setback for Brave Little Hearts of Africa. He died during the pandemic and a lot of things changed after the pandemic was over. Hospitals became stricter and everyone was still very cautious.

I personally also needed time, time to process the changes his passing had [00:33:00] on both myself and the family before I could focus on Brave Little Hearts South Africa again. When Fareed died, everything else inside of me died too. But being invited to the 8th World Congress of Pediatric Cardiology and Cardiac Surgery in Washington, D.C. last year and meeting fellow Global Arch members was just what I needed to get Brave Little Hearts South Africa back on track again. A fire started burning inside of me again. I remembered what it was like to advocate for CHD. I remembered why we started Brave Little Hearts of Africa. I remembered what it was like to live passionately again.

And I remembered what our goals for Brave Little Hearts of Africa and the CHD community are. 

Anna Jaworski: That's so beautiful. I had no idea that it was that one event that lit a fire in you again, but I remember reaching out to you through Facebook on Fareed's private messenger, [00:34:00] and, praying for you and your family because I knew it was going to be so hard to lose a father and a husband who was so loving and so giving. He was an unbelievable man. Many of my long-time listeners may remember me talking before about Elvis and his mother Esther. We had so many times that we had planned on having him come on the podcast, but for whatever reason things never came through. But the one thing that did happen that was life-changing was a mother from Africa wrote to me and told me that her son Elvis was going to die unless he had surgery.

And she wasn't asking me for money, and she wasn't asking for me to pay for his surgery. She was asking for me to help her find somebody to save her son's life. And at that time, I had met online Fareed Matthews and [00:35:00] another gentleman. I reached out to both of them and I said, "Please, please, we have to help Elvis."

The mother had sent me his medical records and a letter from his cardiologist. So I had evidence that everything she was saying was true. So I sent all the information to Fareed and he made it his life's mission to help save Elvis.

And he would not stop. I remember we went through months of correspondence and he contacted every non-profit and non-governmental organization he could to try and find help for Elvis. And finally, after months and months of work, Heartgift, which is based in Dallas, Texas, agreed to fly Esther and Elvis to Dallas for life-saving surgery.

So I got a chance to drive to Dallas and meet Elvis and meet Esther. We had been talking for months. I felt like I knew [00:36:00] them. And I held my iPad up with Elvis after his surgery. And it had the Brave Little Hearts logo on it. And we snapped pictures and I hugged them. And this was all pre-COVID. So we didn't have to worry about that.

But it was amazing to me that we could communicate across time zones and work together to save this little boy's life and his legacy will always be out there because Elvis is now in high school and he wouldn't be if it hadn't been for Fareed Matthews. That was a man who just would not give up and I want the world to know how special he was.

Raadhiyah Matthews: 

I don't have anything to say now. 

Anna Jaworski: I feel lucky to have worked with him the way that I [00:37:00] did. And we had so many conversations where we put our heads together. What can we do? What can we do? And I know that you have had some awareness projects that you did in your town to raise awareness.

Can you tell me about that?

Raadhiyah Matthews: There was a bicycle ride where they cycled. There was a London Marathon where a gentleman ran for Brave Little Hearts a few years ago. 

Anna Jaworski: Oh, wow. 

Raadhiyah Matthews: Yeah. The London Marathon, I think it's called. 

Anna Jaworski: I'm so impressed that you were able to pick yourself up after losing your husband, which I'm sure was the worst thing to ever happen to you, but that you've been able to refocus your efforts on the vision that the two of you had when you started Brave Little Hearts South Africa.

Raadhiyah Matthews: You're going down a difficult path again. Sorry. 

Anna Jaworski: That's okay. 

Raadhiyah Matthews: Yeah. 

Anna Jaworski: It's okay. 

Raadhiyah Matthews: Mm.[00:38:00] 

Anna Jaworski: How are you doing this without crying? I have tissues in my hand right now. I'm wiping my eyes. 

Raadhiyah Matthews: You know, when you asked the question "...sadly a husband and life partner" when I read the question I thought of messaging you and saying, "Leave it out. I don't want it in there," and I thought 'No, I have to face it.

I have to deal with it.' Every time people mention his name, I cry because he had a vision and he was going to... I'm not sure if I'm going to say this correctly... he was going to conquer CHD. That is what he wanted to do. You saw his passion in what he did. 

Anna Jaworski: Absolutely. 

Raadhiyah Matthews: And his drive and what he did. And nothing was going to stop him, and I think that death was the thing that stopped, but he was not going to stop. 

Anna Jaworski: And the fact that you've picked up the baton and now you're moving forward. He would be so proud of you, Raadhiyah.

He would be so proud of you. [00:39:00] 

Raadhiyah Matthews: He'd always tell me, I'm going on an interview. You need to do it. I'm like, "No, I'm fine. I don't need to do it. I'm fine. I don't need to do it. You go." And he said, "You're going to eventually have to learn how to do it." And I said, "No, you don't worry about it. And I'm happy doing advocacy in the hospital--family support." And I joke about it sometimes. I speak to him and I say, "You told me I needed to do this and now you're forcing me to do it." 

Anna Jaworski: But he's with you. And I think there's a piece of him in me too, because he's my friend and even though he's not on earth with us anymore, I still feel his presence.

I feel his passion. I'll never forget the conversations we had and how he was like, "We parents, we can come together, we can make a difference." And I said, "I know we can; we're going to do it." That's what we need to keep doing is we need to keep moving forward because Fareed was [00:40:00] right.

We can make a difference and we can save Elvis and we can save other children, too. So I commend you for picking up the baton. I know this has not been easy. I'm so thankful you let me give you a hug when I met you last year and that you were brave enough to come all the way across the ocean from Africa. I know that was no easy feat for you.

Was that the first time for you to leave your continent? 

Raadhiyah Matthews: It was the first time out of the continent for me, yes. To be honest with you, when I received the invitation to come, I told everyone I'm not going. And everyone said, "Why?" And actually the reason was because I didn't want to go without him.

I got a lot of support here at home saying that I should go and everyone encouraged me and it was the best decision I could have ever made. Because then I met Global Arch, all the [00:41:00] other CHD advocates, and that ignited something inside of me. Everyone was speaking about Fareed at his memorial, and I thought, 'No, I have to continue with Brave Little Hearts Africa, because there are many families out there who still need our help.'

Anna Jaworski: Oh, absolutely. Absolutely. I'm so glad you came. I know it was a difficult journey for you, but it was exciting to be part of Global Arch and to be part of the Global Village at the 8th World Congress. Friends, it was huge. It was the largest event I've ever been to for congenital heart disease. And it meant so much that we advocates could come together and support one another.

All of us have struggles that we're dealing with, but when we are united, we can minimize those struggles and we can share with each other to improve the lives of children with congenital heart [00:42:00] disease around the globe. Again, I have to commend you. And I'm glad that we're keeping Fareed's light alive in you and that we're continuing with his mission. So thank you so much for coming on the program with me today, Raadhiyah.

Raadhiyah Matthews: Thank you for having me on the show, Anna. I really enjoyed talking to you and sharing our story. 

Anna Jaworski: I want us to have another episode in the future with you and Thaakirah. I think that would be so much fun, don't you?

Raadhiyah Matthews: I do. And she would be super excited. 

Anna Jaworski: Oh, we're just going to have to make it happen. I know now that she has her own radio show, this will just be piece of cake for her. 

Raadhiyah Matthews: She has her dad's personality and she has her dad's spark... 

Anna Jaworski: We didn't even really get to talk about her radio show, but for now, my friends, that does conclude this episode of Heart to Heart with Anna. Thank you so much for listening today. Please consider becoming a patron of our program by visiting https://patreon.com/hearttoheart. And remember, my [00:43:00] friends, you are not alone. 

 Conclusion: Thank you again for joining us this week. We hope you have become inspired and empowered to become an advocate for the congenital heart community. Heart to Heart with Anna, with your host, Anna Jaworski, can be heard at any time, wherever you get your podcasts. A new episode is released every Tuesday from noon Eastern time.