Navigating Parenthood with a Congenital Heart Defect During Covid-19: Amelia Woods' Journey

What happens when you're expecting a baby with a congenital heart defect during a global pandemic? Join me, Anna Jaworski, as I sit down with Amelia Woods, a courageous heart mom who faced this exact challenge. Amelia shares the emotional rollercoaster of managing her son Henderson's dextrotransposition of the great arteries (d-TGA) diagnosis at 25 weeks' gestation. We explore the intricate preparations for Henderson's birth and his crucial surgeries, including the atrial balloon septostomy and the arterial switch procedure, all while navigating the complexities imposed by Covid-19.

Amelia and her husband, Richard, had to master the art of setting boundaries to protect their medically fragile newborn amidst an unprecedented health crisis. Amelia opens up about the isolation they felt and the essential bonding time that these boundaries provided. She candidly discusses the importance of connecting with other heart moms for support, while also maintaining a degree of privacy for Henderson's future. Together, they reveal their strategies for navigating the postpartum period and the significance of familial support during such trying times.

In this heartfelt episode, we also spotlight Amelia's advocacy within the congenital heart defect (CHD) community. By writing a book, "The Boy Born Brave," Amelia is a beacon of resilience and activism. We delve into actionable steps you can take to raise awareness and support the CHD community, including nonprofit fundraisers and heart walks. Tune in to learn how combining unique talents can drive nonprofit success and how you, too, can make a difference in the lives of children with CHD.

Information Mentioned in the Episode:

Amelia's website: https://heartlikeamother.com
Amelia's shop: @heartlikeamother.shop
Amelia on Instagram: @heartlikeamother

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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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HeartWorks empowers the CHD community by advancing research and finding cures for heart defects.

Chapters

• 0:00 AmeliaWoods
• 10:51 Segment 2
• 22:59 Segment 3

Transcript

Amelia Woods: 0:53

It was a lot. Covid certainly did not help. I will say 2020 was a wild year to have a baby, especially one that was medically fragile.

Anna Jaworski: 1:03

Welcome to Heart to Heart with Anna. I am Anna Jaworski and your host. I'm also a heart mom to an adult who was born with a single ventricle heart and is 29, almost 30 years of age already. That's the reason I am the host of your program. With me today is Amelia Wood.

Anna Jaworski: 1:20

Amelia is a heart mom to Henderson and she's also a mom to Lennon. Henderson was born with detransposition of the great arteries, or DTGA. After her son was born, she built a small shop in 2021 called Heart Like a Mother, to raise awareness of the prevalence of congenital heart defects, to connect with others in the CHD community and to give back to the CHD community through the proceeds of her shop. She has also written a book called the Boy Born Brave, in honor of Henderson. This is her first children's book.

Anna Jaworski: 1:56

We'll be talking about Amelia's book in the third segment, but first we're going to learn more about Henderson and in the second segment you're going to learn about Amelia's blog and a topic that is near and dear to her heart. You can find Amelia on at HeartLikeAMother and at HeartLikeAMothershop on Instagram, as well as HTTPS//HeartLikeAMothershop on Instagram, as well as https. Colon slash slash heartlikeamothercom. For those of you who are listening on your bike or in the car. Don't worry, that'll be in the show notes. So, amelia, welcome to Heart to Heart with Anna. You're a member of the Heart Community Collection, which is an online group of people who have written books or had means of advocating for the CHD community, but this is the first time for me to have you on the show, so welcome to the program.

Amelia Woods: 2:44

Yes, thanks so much for having me, Anna. I'm really happy to be here.

Anna Jaworski: 2:49

I'm really happy to talk to you one-on-one, and I'd love to get started by knowing a little bit more about Henderson. Not everybody knows what DTGA is, so could you explain to my listeners what that heart defect is and when Henderson was first diagnosed?

Amelia Woods: 3:06

Sure, so DTGA is dextrotransposition of the great arteries or complete transposition of the great arteries, which is the structural heart defect that occurs when the main pulmonary artery and aorta are switched. So a typical heart the right ventricle pumps out to the pulmonary artery, to the lungs, and the left ventricle pumps out to the aorta, to the body. So his were switched and luckily we did know about his diagnosis before he was born. I was about 25 weeks pregnant when it was confirmed through the first of many fetal echoes and we began making our plans for delivery and heart surgery outside of our hometown.

Anna Jaworski: 3:46

Wow. So you didn't get a chance to have the OB-GYN, who had been following you through your pregnancy, actually deliver the baby. You had to go to a different hospital.

Amelia Woods: 3:57

Correct. So we are in the panhandle of Florida and we do not have a heart center here. We have pediatric cardiology but we do not have a cardiothoracic surgeon here. So we went to Atlanta at Children's Healthcare of Atlanta to deliver and also where Henderson had his surgery.

Anna Jaworski: 4:25

That's such an excellent facility.

Amelia Woods: 4:26

You're lucky that it's close enough that you could do that. Yes, it was about five hours from where we're at, so we did have to plan some extra time prior to delivery and we stayed for some time after his recovery as well, but it was nice to be able to plan it. I know a lot of local families to us aren't quite as lucky to have that extra time that we had to plan to go somewhere.

Anna Jaworski: 4:49

Right Now. Do you have family in the Atlanta area?

Amelia Woods: 4:52

We do. My mother-in-law is there, and that was actually one of the reasons why we chose Atlanta, because we would be able to stay with family during such a difficult time. It was really nice to be able to stay with family versus having to stay at a hotel or Ronald McDonald House or other housing options.

Anna Jaworski: 5:12

Right, it is so hard. That's one of the reasons I went to San Antonio for my child's care, because my parents lived there and I knew I could stay with them anywhere, five minutes from the hospital, which was really convenient for us. But having that support of my parents meant the world to me Absolutely. Yeah, it makes a big difference. It's amazing that they know at 25 weeks. I didn't find out until after my child was born and my child also had detransposition of the great vessels. But that's what saved my child's life, because my child had a single ventricle heart and since the right ventricle was the bigger ventricle and that's the one that pumps blood to the whole body, it actually ended up helping my child, which you don't expect for something bad to have a good consequence, but in my child's case that ended up working out.

Amelia Woods: 6:04

I have heard that.

Anna Jaworski: 6:06

Have you. Yeah, mike is not the only one. I've actually met quite a few people whose children have hyperplastic left heart syndrome, which is what they're normally diagnosed with, and as a component of that they actually have DTGA. So they don't repair the DTGA in our kids because they're single ventricle kids, they just move straight to a BTT shunt. Now what kind of repair did Henderson have?

Amelia Woods: 6:32

First he had an atrial balloon setostomy in the cath lab when he was about 10 hours old, and when he was just barely two days old they took him back to the OR for his open heart surgery, which was the arterial switch procedure typical now for DTGA patients.

Anna Jaworski: 6:50

At this point that was almost four years ago, so he's doing really well post-op, but he just had the arterial switch procedure at that time post-op, but he just had the arterial switch procedure at that time, right, and what the arterial switch was so amazing about that is that it pretty much makes the heart conform to what it should have been to begin with, and I think that's amazing that they are able to do that.

Amelia Woods: 7:15

Yeah, I think it's amazing and, prepping for the surgery, talking with our cardiologists and surgeons, going over the history of surgical procedures that would have happened for DTGA patients many years ago being the atrial switch procedure. I'm just glad that there's another means for making that switch, because it just made recovery different for him. From what I understand, and usually it's what they refer to as a one and done surgery. So so far that is true for us, which is great.

Anna Jaworski: 7:43

That is so great. And for my listeners who are maybe just finding out that they're going to have a baby with a heart defect, that first procedure that she talked about, the atrial balloon septostomy, what that is atrial balloon septostomy? What that is is they go in and make a little connection, a little hole in the heart to let the blood go through so that the baby won't turn blue. We want to have a connection when you're inside the mother. These babies don't have to worry about that because the mothers are oxygenating the blood and helping the baby by putting it through their body. But once they're born they're on their own and so that little procedure helps to keep things open until they can have their open heart surgery. And it's nice when they don't have to rush in emergently and this buys them that time to do that, absolutely. Did they also put him on prostaglandin?

Amelia Woods: 8:43

Yes, he was also put on that, so there's a normal connection that happens in the baby.

Anna Jaworski: 8:49

That's called a PDA or patent ductus arteriosus, and for most babies that PDA closes anytime from once they're born to usually within the first 10 or 11 days of life. But don't you know if you're going to depend on that, it might close early. So it makes sense to go ahead and give the prostaglandin that also keeps that connection open and make that little hole too. Then that way that gives them the time they need so they can get Henderson in to have his surgery when it's optimal, not under an emergency window of time. It's not as scary as it sounds. I think it used to be a lot scarier in the past, but these doctors do so many of these procedures now it's almost routine, isn't it, amelia?

Amelia Woods: 9:33

Yes, and it felt very much that they were very prepared more than prepared to do this in a time that, for parents, can feel very scary and, knowing the technology that we have now and also the advancements in cardiac science, now that they're able to do these things so regularly, that they are so good at it and it doesn't have to feel as scary, knowing that they're in good hands, Absolutely.

Anna Jaworski: 9:56

What was the most difficult part of your CHD journey with Henderson in his early days?

Amelia Woods: 10:02

For me at the time it was difficult feeling like I could bond with my newborn as a first-time mom. He is my firstborn, so everything was very new and very scary already in some ways. But adding the heart defect really elevated that for me. Personally. I was very scared to hurt him in the first couple of months, especially when he was in the hospital. We've certainly moved past that fear by now. So my current struggle is mostly with anxiety of his overall health. Some days it's not all the time, but if I miss something or some weird symptom I'm always worried. Maybe it could be heart related. So I'm still learning, even four years later, to trust my gut and know, as he's getting older, that his words also need to be trusted with how he tells me his body's feeling. That's been the most challenging for me, but I know with time it will continue to get a little bit easier for us.

Anna Jaworski: 10:53

Amelia, one of the ways I came to know a little bit about you and your story was I discovered you had a blog. So can you tell me why you started your blog, the name of your blog and how people can find it?

Amelia Woods: 11:06

Yeah, my blog is called Heart Like a Mother. I started it in 2021. My son at the time was about seven months old when I decided to start writing about our story. There are not a lot of heart families that I'm aware of in our community. We have a pretty small community in the Florida Panhandle, so my main goal was to raise awareness in our area for congenital heart disease, and I also wanted to share with our extended family and some of our friends that maybe didn't know all the details of what we went through and couldn't understand our perspectives at the time what that was like to be parents to a heart warrior. So that's really why I started it, and he is really the inspiration behind Heart Like a Mother, and everything that I do for Heart Like a Mother is for Henderson and the heart community as a whole.

Anna Jaworski: 11:57

In your blog, Amelia, you talk about maintaining boundaries to protect yourself and your new family. How is this helpful in coping with your postpartum period and with limiting misinformation regarding Henderson's condition?

Amelia Woods: 12:14

So making the choice, as a couple, to process the information we were receiving first before reaching out to give updates to family and friends made it a little easier to navigate. I'd say, knowing Richard, my husband and I had to figure this out on our own. We had to learn to become parents to a medically fragile newborn. We were living in a pandemic at the time. It was all very scary. We were living in a pandemic at the time. It was all very scary. So ensuring we stuck to our house rules, as we called them, helped us to be able to control something in a situation that was entirely out of our control. My postpartum period was actually really lonely in some ways in 2020, in about the first 10 months to a year of his life but the silver lining of having those boundaries in place is that it really gave us the time we needed to bond as a new family me with Henderson and us as a new couple becoming new parents.

Anna Jaworski: 13:09

Yeah, that's a lot to get used to. How long had you been married before you had Henderson?

Amelia Woods: 13:15

Not very long. We celebrated our one-year wedding anniversary right before he was born, so he was born in July. We celebrated our one-year anniversary in May.

Anna Jaworski: 13:24

It was not a very long time.

Amelia Woods: 13:27

Yeah, our first year, and I would say two years of marriage, was really intense in a lot of good ways, but also a lot of scary and hard ways.

Anna Jaworski: 13:38

Sure, because just getting married is a huge transition. And then getting pregnant is another transition. And then bringing that filed home into a new home that's a huge transition. But then on top of that let's add a complex congenital heart defect, gary. That's a lot to deal with. And then let's do this all during cozy. Oh my gosh, amelia it was a lot.

Amelia Woods: 14:05

Hovid certainly did not help. I will say 2020 was a wild year to have a baby, especially one that was medically fragile yeah, yeah, I would imagine because they weren't allowing many people in the hospital.

Anna Jaworski: 14:18

When I had my baby, my parents came. My sister was there, my sister's in law. How bad was it as far as them limiting people to see you and to see Henderson?

Amelia Woods: 14:29

It was actually completely limited, I would say. My husband and I found out literally a week before I delivered and I had a scheduled C-section. Given the situation with his heart defect, my husband and I had about a week where we were just hoping the hospital was going to let him come and he was able to be there for the C-section. And then we also had to get confirmation from the children's Hospital that both of us could visit Henderson every day. We had to check in and get our temperature checked every single day.

Amelia Woods: 14:59

That was always the scariest part of every morning for those three weeks that he was in the Children's Hospital recovering was I hope I don't have a fever. I hope I don't have a fever like praying fingers crossed that we can both go in and see him. And luckily we stayed healthy the entire time. We were very careful, of course, wearing a mask every time we were in there, washing our hands, all of the protocol that was in place we had to follow and we did follow for his health and our own. And so, yeah, my husband was allowed and I was allowed in there as well but it was only the two of us, no grandparents, no, grandparents, yeah, no, only parents could come.

Amelia Woods: 15:34

I remember that there was a time where we debated if my mother-in-law wanted to come up there, and I think she was just a little bit too nervous, but also they were very strict on how often you could change visitors, and that was really what it was. So we just kept it between my husband and I.

Anna Jaworski: 15:52

Right, it is so complicated regardless without COVID, but that COVID scare that we went through for that three years just made things even harder, and that adds to a feeling of isolation. And the way that a lot of people during COVID handled the isolation was through social media, but you decided to limit your social media during that time. So how did you strike a balance between limiting the negative impact of social media and receiving the support that you needed during that really difficult time?

Amelia Woods: 16:29

At the time I'd actually not started Heart Like a Mother yet, so my social media community and following was much smaller, really only people I knew personally and had met and just knew through other people Using social media. We primarily asked for prayers and we would post updates when we felt ready after processing our plans and information that we were getting about his heart During recovery. I didn't share a ton of photos. I remember one day specifically, he had a really rough night and had to be re-intubated and that was actually the only day that I have no photos or really any documentation and I did not post about it on my stories other than asking for prayer that day, and I think that came out of a protection for him and for myself.

Amelia Woods: 17:14

I, of course, was not focused on social media that day or many days at all back then and really had a hard time even reiterating information to family because it was so much and just so heavy. Sometimes I will say, if I could go back, though, I do wish that I would have connected with other heart moms prior to birth, because they really are the only ones who get it the same way that you do. I do know if Henderson ever does need further interventions in the future. I'll now have a group of amazing mothers and friends to turn to, but at the same time we'll still choose to probably keep some information private out of respect for him as he grows. Information private out of respect for him as he grows. So really that is how I use social media. Back then was to provide updates, but nothing really extensive about the journey that we were walking through. I kept that pretty private.

Anna Jaworski: 18:03

I completely respect that. Things are so different today than when I gave birth. My firstborn will turn 33 this year and my heart warrior will turn 30 this year. So it's really hard to believe I've been a mother that long but I have and things were really different. I mean, we didn't even have cell phones back then, we didn't have digital cameras and there was no Facebook back then. I can't imagine what it's like now.

Anna Jaworski: 18:31

You really do have to protect yourself. That wasn't something that we really had to worry about three decades ago. So I respect you for setting those boundaries and just being really clear with your husband, with yourself, with your family, because if it's nebulous, then people might do something that would upset you. But if you're like, no, my family has these rules, these boundaries, then it just makes it crystal clear and people can hopefully respect you and make that aspect of having a child a little bit easier. Yeah, of course. So when I had my child way back in 1994, nobody talked about medical trauma or what that might mean to me, the mother. Everything was focused around the baby. Currently, there is more information about the mental health of us heart moms. What do you think we need to keep in mind when it comes to good mental health practices for heart moms when they're in the hospital with their baby with that first surgery.

Amelia Woods: 19:34

I think it's really important for you to focus on things that make you feel grounded. So for me that was prayer and worship. In some ways, just listening to worship music, talking with my husband about things, making sure that I wasn't becoming a recluse with the information that I was getting, just knowing that I could turn to someone, and that doesn the information that I was getting, just knowing that I could turn to someone. And that doesn't mean that you turn to everyone Not everyone always has to know what you're going through but knowing that you can have some kind of a foundation, whether it's faith or a spouse or a parent or just a best friend, someone that you can say hey, I'm really struggling with this, this is really hard. Please help me get through this. Talk about it with them.

Amelia Woods: 20:16

For me, it was prayers, asking for strength to get through it, asking for healing. The most peace that I could feel about the situation was that he was going to have a mended heart, no matter what that meant. It was the reality we were dealing with and we had to get through it. It was what it was. We could not change it. I think that's another thing mentally is just accepting that you cannot change what's happening and how do you best move forward with that information and with that situation without becoming destructive mentally and emotionally over what's happening, but saying this is what's happening and this is how I'm going to get through it. It's going to be hard, and know it's going to be hard, but that you also will get through it.

Anna Jaworski: 21:00

That's all excellent advice. I had my Bible in the hospital with me. Like you, my faith was something I clung to, because what you discover as a heart mom is that what you discover as a heart mom is that control is an illusion. And that's really hard, because the thing that you want to do as a mom is to protect your baby, and you're not really in a position to do that except in choosing a good hospital, in choosing good doctors, in trusting those doctors, in trusting the path, path that they have chosen, and trusting that.

Amelia Woods: 21:38

God has this.

Anna Jaworski: 21:39

We don't know how many days we have with our children. We all want our children to outlive us, but that doesn't always happen, and I prayed for God to give me the strength to handle whatever was going to happen, that I could still be there for my husband, and I had a three-year-old At the time. I knew I needed to be there for Joey, I needed to be there for Frank and I wanted to be my baby's mother and I wanted my baby to survive, of course, but I knew that it was really in God's hands.

Amelia Woods: 22:12

Yeah, I totally agree. Another thing on the mental health front that I think would be good to mention. I don't know if other heart moms feel this way I know I've talked to a couple who might but I think it's really important for doctors to understand the parents' trauma and mental health side of having a child. With CHD we have had wonderful doctors and with DTGA specifically, we've been told a couple times it's one of those one-and-done kind of defects, which, of course, I am so grateful to hear from them. But I do think, hearing from doctors, that my concerns or anxieties or questions I may have are valid. Even though we're not expected in the typical course of treatment to need further interventions right now, I still saw my child go through something life-changing and do have flashbacks sometimes to those moments in the hospital.

Anna Jaworski: 22:59

Yeah, Amelia, we know from the introduction that you've written a book, so tell us what inspired you to write the Boy Born Brave you've written a book, so tell us what inspired you to write the Boy Born Brave?

Amelia Woods: 23:49

My son, henderson, of course, inspired the book and really the words to the story. That really started as a note in my phone one night. But what inspired me to further add to the story and move forward with publishing? It was my desire to highlight the diversity of the heart community as I've seen it on social media and in real life. There are heart kids who need additional therapies like feeding tubes and walkers and trachs, and there are girls with heart defects, many girls and people of other races and ethnicities, and adults who live with CHD. So in following their stories, coming to know their parents, it inspired me to create something representative of them too, and not just my son, but so that he can see there are others like him that may look different than him or require other aids that he maybe won't know about, but in my book I hope that that's obvious to people.

Anna Jaworski: 24:37

It was you did such a beautiful job of being inclusive in your book. I feel lucky that I got to meet you in the book and the artist did a really nice job. I was like wait a minute, I know that child.

Amelia Woods: 24:50

Yes, hannah is incredible. She is an artist and graphic designer and she is also a heart mom, so that was really special to do it with her. Her son's featured in the book as well, and she took photos of real life heart warriors. Their parents submitted it and she illustrated their photos digitally. So it is real life depictions of these people. It's amazing.

Anna Jaworski: 25:13

It really is amazing and she did such an excellent job, and I loved how, at the end of the book, you recognized those families and gave credit to the fact that this book was not a one person activity. This was something where you actually helped to bring the CHD community together, so it's really a CHD community book.

Amelia Woods: 25:34

It does feel that way, thank you. I'm very glad that it comes off that way to readers as well. It does.

Anna Jaworski: 25:40

Well, in addition to birthing a book, you also give a birth to another son, so that was exciting to see. Will you be writing a book inspired by Lennon?

Amelia Woods: 25:51

I would love to write a book inspired by Lennon. I don't have any current plans in the works yet, but I've thought of other children's book ideas and both CHD related and otherwise, so I would love to include Lennon in one of those one day.

Anna Jaworski: 26:04

Tell us where we can find your book, Amelia.

Amelia Woods: 26:08

It's currently available on Amazon and barnesandnoblecom. I'll also have copies available on my own website soon, which is heartlikeamothercom. In the next couple of weeks.

Anna Jaworski: 26:20

And can people find your blog at heartlikeamothercom as well?

Amelia Woods: 26:25

Yes, that is where everything is located the blog and the shop, and the Boy Born Brave will also be on my website. Okay, perfect.

Anna Jaworski: 26:33

Well, Amelia, you have been a great advocate for CHDs by starting your shop and writing your blog and now writing a book. What advice do you have for others in the CHD community who may also feel compelled to do more to raise awareness of congenital heart defects?

Amelia Woods: 26:51

I'd say to just start with writing ideas down. Just over three years ago when I started my blog, I knew nothing, but I knew that I wanted to share our story and raise awareness because I just felt lonely in my local community. With it it grew to be more than just my local community here, but I am still so glad that I started it. So figure out what you want to share, what you're comfortable sharing from your own story and what avenue you might take to do that. One idea that I wanted to share with people is that lots of nonprofits do fundraisers throughout the year where you can have teams, and that's a great place to start small but helps on a much larger scale for the CHD community as a whole.

Anna Jaworski: 27:32

That's a great idea and that's a great way to get out and meet other people. It's a great networking opportunity and you're doing something for a great cause. I know there are heart walks. There are all different kinds of ways that you can give back to the heart community. I love that and you know what friends? If you search for nonprofit organizations, it is amazing how many congenital heart defect nonprofit organizations there are. On my website, if you go to congenitalheartdefectscom, I have a whole page that has all different kinds of resources and I list nonprofit organizations that help the heart community. So, whatever your talent is Amelia said that Hannah's good with illustrations. I'm sure there are nonprofits that would love to have Hannah help out. Amelia's great with words. I'm sure people would love to have her help out as well. Everybody has a certain skill or talent and I think by us joining forces together, it makes everybody better, Don't you think, Amelia?

Amelia Woods: 28:34

Yes, I totally agree.

Anna Jaworski: 28:36

Well, I can't believe it's already time for us to stop. Amelia, thank you so much for coming on the program. Yeah, thank you so much for coming on the program.

Amelia Woods: 28:43

Yeah, thank you so much for having me share. I've really enjoyed talking with you and getting to share with your community. I really appreciate it.

Anna Jaworski: 28:50

I've enjoyed hearing your story and I loved your book, so thank you for sharing that with me. It's very special. Thank you, friends. Don't worry, I'll have links to Amelia's website in the show notes. So if you're exercising or whatever, just look in the description of the show and there will be a link right there for you to click over to her lovely little shop and her wonderful blog. It's so informative. I really do encourage you to look at her blog, read it and leave her a comment. I know she would appreciate that. That does conclude this episode of Heart to Heart with Anna. Thanks for listening today. I hope you found this program helpful. I appreciate Amelia Woods sharing her helpful book with us and I'm thankful for all of you, my loyal listeners. I'd love it if you would take a moment to review our podcast, on whatever platform you're using to listen to the program, because that's helpful for other people who are looking for a podcast about congenital heart disease. Have a wonderful day, my friends, and remember you are not alone. Thank you.