Congenital heart defect

I said I was academically inclined.

So I started looking into the research and I just found that there wasn't much at all on this topic in infants with CHD.

Lots in the NICU, of course.

So I just became curious about it.

Yeah, so we looked at one of the analysis that we did was, does the number of practices that a site have associate with, you know, better lactation outcomes? And we did not find that that was the case, but we did identify a couple of practices that seemed like perhaps in a group they might have some effect.

And when we looked at all of the outcomes, the two that stuck out the most were a developmental care protocol in the unit and also having parent education lactation materials and or support groups.

And it seemed to matter whether those materials had some sort of focus on hospitalized infants or with CHD and if they were delivered prenatally.

As opposed to just postnatally.

This week, we move into the world of congenital heart surgery.

The title of the work we'll be reviewing is Birthday of the Week is Associated with Surgical Timing and Postoperative Brain Injury in Neonates with Congenital Heart Disease.

The first author of this work is Jennifer M. Lynch and the senior author, Daniel J. Licht.

And the work comes to us from the Children's Hospital of Philadelphia from multiple departments within that institution.

When we're done reviewing this paper, I'm hopeful that Dr. Lynch will be able to speak with us about it.

Therefore, let's move straight on to this article and then a conversation with the work's author.

This week's work begins by reminding us that one-third of children with congenital heart disease need neonatal repair, and also how neurocognitive disabilities remain a significant morbidity in congenital heart disease patients.

They review how white matter injury on MRI is thought to be a major player in these neurobehavioral problems and review how the high prevalence of these on MRIs of the brains of congenital heart disease newborns prior to surgery strongly points to them as a possible causative issue.

From navigating heart journeys to juggling the chaos of parenting and embracing the big, sometimes scary life transitions, this space is for the brave and tender-hearted.

Whether you're deep in the trenches of motherhood, navigating a CHD diagnosis, or just here for a little solidarity and storytelling, you're in the right place.

I hope you find a sense of community and belonging here.

Grab your coffee, take a deep breath, and let's walk this road together one heartbeat at a time.

Welcome back, everybody.

Today, I have Kelly DiMaggio joining me, and Kelly is an adult living with HLHS, and she is really living a life that so many of us as heart parents really hope for the future for our heart heroes.

So growing up with CHD and growing older with it, she has been just dedicating her life to advocacy and furthering research, and she is part of the Project One in 100 team, which is a movement working to change how the world sees this diagnosis, not as an ending, but truly as a beginning and what we can continue to do to make waves in the future.

So today isn't really just about the heart defects.

which I've seen in patients.

So ultimately, babies with coarctation of aorta, they do generally well, but there are risks because now this particular baby, Jacob, it's interesting that they gave him necrotizing enterocolitis because that is a very big risk with babies that have congenital heart disease.

It's more preterm babies we see it with, extremely preterm babies.

Babies that have any type of placental insufficiency.

And perhaps if we're here, we can stand together.

I originally wrote this letter for tiny tickers for parents of heart babies, but as I wrote it, I realized that so much of what I was trying to say reaches beyond CHD.

It belongs to NICU parents, PICU parents, parents of children facing serious illness in all sorts of circumstances.

So I wanted to share it here too, in the hope that it might reach someone who needs it.

Are the things that we see on this marginal increase level from IVF itself, or is it from the conditions that created the infertility that led to IVF? Studies that show higher rates of premature birth, low birth weight, placental complications, abnormal cord insertions, higher NICU admissions and congenital anomalies, including congenital heart defects.

That sounds scary because you're like, oh my gosh, but I don't think that the vast majority of the concerns that we see is from just the act of doing IVF.

if you are on the infertility journey and you are considering ivf or you are grappling with this idea maybe you aren't wanting to do it yet but it might be a future thing down the line and you're just not really sure what to do to optimize your body so that maybe you have a better outcome in getting pregnant In having healthier pregnancies and healthier babies, I have an entire course and support on this inside of Womanhood Wellness, my membership.

And so the moral of the story is what the research actually shows is that most IVF children are incredibly healthy, that they're totally fine, and there is no issue.

However, there are some studies, if you dive deep and look it up, and we could talk about the pros and cons of studies and what is being done, and that's a conversation for another day, but there are some studies that show that there's absolutely normal growth, normal cognitive development, normal school performance, normal long-term health.

There's also studies that show higher rates of premature birth, low birth weight, placental complications, so issues with the placenta, abnormal cord insertions, higher NICU admissions, and congenital anomalies, including congenital heart defects.

Congenital means born with.

And there's potentially some increased rates of asthma, allergies, eczema, so that kind of triad, and some cardiometabolic differences.

Years later, he and his wife, Jen, learned during pregnancy that their son, Jackson, would be born with a critical congenital heart defect.

Jackson had open-heart surgery at Cincinnati Children's when he was just six days old.

Dylan is the author of Jackson's Journey, which he wrote to help CHD families feel less alone and to give fathers a stronger voice in the CHD community.

Welcome to the CHD Podcast, Dylan.

Thank you so much.

It's awesome to be here.

Visit wise.com. T's and C's apply.

Absolutely.

From navigating heart journeys, to juggling the chaos of parenting and embracing the big, sometimes scary life transitions, this space is for the brave and tender-hearted.

Whether you're deep in the trenches of motherhood, navigating a CHD diagnosis or just here for a little solidarity and storytelling, you're in the right place.

I hope you find a sense of community and belonging here.

Grab your coffee, take a deep breath, and let's walk this road together, one heartbeat at a time.

Our older girls went back to school, or they had their first day two weeks ago now.

But Goldie is starting preschool next week.

And so this has been something that, that we are navigating obviously for the first time of having a CHD kiddo go to school.

So I wanted to share a little bit, as I've shared some of the things that I've been doing on Instagram, and I wanted to bring it obviously over to the podcast as well.

So I, I don't actually have a good guess.

I don't know if this is one of those classic three severe CHD types that present like this versus PPHN.

And so I'd, I-- without more data, I'd have a hard time yet perfectly differentiating this.

Uh, but let's get some more data and, and see where this could be.

Um, just to reiterate, though, uh, some of the points that you're bringing up with the echo and then the clinical picture.

You know, if we're presenting a case with like, you know, spot numbers once a moment in time, but, you know, even with like the description of like, sure, pre and post-ductal sats and congestion and like my running to left-sided dysfunction, almost certainly this kid was gonna be desaturated during periods of time in the unit, and this almost certainly would have looked like PPHN, and, and even I may have like started nitric on there.

The, the caution I have in cases is, um, you know, the echoes are super helpful, but anytime I see an X-ray, right, and the story of a kid who is fine, fine, fine and like very quickly fell apart, um, after like being on mom's chest, uh, my fear is always, you know, just like you said, PH or CHD.

And when the diagnosis could potentially be obstructed veins or PH and my X-ray is weird, I'm always just hesitant on just trying PH first because it would make it worse.

It's pdheart at gmail.com.

This week, we move into the world of cardiovascular nursing and congenital heart physiology when we speak with Ms. Sharon Welsh, who is the founder of Clear CHD Physiology, which has grown from an Instagram account called Congenital Heart Physiology into a physiology-first educational platform.

that includes the digital library, physiology maps, simulated learning resources, and Clara, the CHD physiology coach using AI.

Ms. Welsh is a longtime cardiac nurse who received her BSN degree at Penn State and eventually her CCRN designation and practiced nursing from 1975 until retiring from full-time clinical work in 2021.

Ms. Welsh began her career in adult cardiac critical care initially at the Lankenau Hospital in the Philadelphia area.

She remained in that position until 2006.

She then became clinical manager for adult cardiothoracic and vascular surgery in Missoula, Montana, and retired from clinical practice in 2021.

At the present time, Ms. Welsh works part-time remotely performing STS congenital cardiac surgery database abstraction, and she is, of course, the founder of this wonderful resource called Clear CHD Physiology, where she's developing physiology-first educational resources for nurses and other clinicians who care for children with congenital heart disease.