#heart defect

[teothesoupcat]

me struggling with adhd: hasn’t drank water or eaten anything all day

me: hmm why have I felt dizzy and exhausted all day? I wonder if it’s a chronic flare up?! Why’s the room spinning?! Why is everything so fuzzy!!

[this-is-deformimisia]

Little brother got upset about my make a wish and later told me my heart defect isn't that big of a deal

This is deformimisia.

I'm sorry...a heart deformity "isnt a big deal"? In what universe is that true?

[samirasystole]

sooo this week it's congenital heart defect(CHD) awareness week, coinciding with the holiday of hearts, valentines day! due to it being the most common birth defect worldwide, and still receiving such little representation, allow me to tell you some facts

heart defects are the most common birth defect, with 1 in 100-110 babies being born with them. this is as common as autism and red hair

there is a wide range of defects and combinations, with lots of variability even with people who have the same diagnosis

a quarter of babies will need heart surgery within their first year of life, i was one of those

in this day and age, 85-95% of us make it to adulthood, with the number dropping to 75% with critical defects

the most common heart defect is a VSD(ventricular septum defect) with is a hole in the middle wall of your heart

more critical defects are Transposition of the Great Arteries, Hypoplastic left/right heart syndrome, and cardiomyopathy in which the heart can't pump blood properly. this often requires a transplant

heart defects might structurally be fixed after surgery, but most patients will need more intervention throughout our lives due to valve problems, heart failure, and rhythm problems. i have had three surgeries, at infancy, 3, and 19

due to the nature of heart defects, we are often disabled without it being visible, and we are often not believed due to our younger age

things like drinking, drugs, taking medication, or going on vacation are not something we can just do, and oftentimes need to be approved by our cardiologist

the first ever heart surgeries were performed on children with heart defects in the 1960's; without us, modern heart surgery wouldn't exist

the rates for PTSD and mental health issues within CHD kids and adults is very understudied, but is estimated to be very high. i got my PTSD diagnosis last year at age 21

although these facts are overwhelmingly negative, it is important to understand that each of our experiences are unique and varied. a different life isn't a bad one, and even though we have our struggles and go through a lot, we find a way to thrive. in my opinion, CHD kids and adults are very strong people who are very good at finding the positives and to be grateful for the life that they have been given. our chances are better and better the more medicine grows, and we often have fulfulling lives.

you have met a person with a heart defect whether you knew it or not, and i hope that with this post you know a little more now! (and if you have the money, donating to a charity organisation focused on heart defects within your country/region is always a good idea) ❤️❤️❤️❤️

for more info

https://www.heart.org/en/health-topics/congenital-heart-defects/about-congenital-heart-defects/common-types-of-heart-defects

https://en.wikipedia.org/wiki/Congenital_heart_defect

[lxcke]

So, they doubled down and just undiagnosed me with a heart defect I've supposedly had for over ten years, spent ~$16,000 monitoring, and missed out on life opportunities for.

Children's Mercy Hospital gave me the diagnosis when I was a kid and I had repeated visits to monitor it because they told my family my aorta might aneurysm and I could die. I had a Mitral Valve Prolapse that was causing blood to backflow into my aortic chamber, and it would only get worse with time.

Each visit up until I turned 17 looked dire. My aorta was "stretched to the maximum safe diameter and high risk for emergency," and I needed to come back for another scan ASAP. Several times this happened.

When I turned 18 and aged out, I went to an adult hospital. The adult hospital had a look and went, "hey wait. This is minor. Possible heart defect?"

And at 22, at a new clinic, my scan came back clean. I mean 100% clean, no backflow, no prolapse, completely normal aortic size, no evidence there was ever a problem. I have a completely mundane heart.

So that leaves me wondering. How did Children's Mercy fuck up that badly? Did they lie to my parents? Because heart prolapses DO NOT HEAL. They are a permanent defect, and I know damn well that SEVERAL echocardiograms would've provided enough info to make a correct diagnosis.

So, either they fucked up ROYALLY, or I'm a goddamn miracle human.

[captainnnnnnnn]

Sketching and drawing was something i loved to do. I could focus so well, i used to dive deep into it. Now i'm getting PEM Crashes and worsening of symptoms from just doing a small little tiny bit. I can't focus my eyes and coordinate my hand. My battery runs completely low. I feel it draining me second by second. My doctors are right, i should not do commissions or projects. I thought i'd be back at it now. But seems like its not time (yet).

[merlinr77-steth]

Part of a German brochure concerning medical care for adults with congenital heart defects and postcards with slogans and puns concerning the heart. The campaign was meant to raise awareness for continuing follow-up checks for adolescents and young adults with heart defects when they transition from pediatric care to adult cardiology.

The slogans read:

Bleib im Rhythmus - Stay in rhythm

Herzflattern - Heart flutter

Herzklopfen - Heart pounding

Hart aber herzlich - Tough but warm ("Hart aber herzlich" was the German title for the 1980s US TV show "Hart to Hart")

Herzschmerz - Heart ache

Lass den Muskel spielen - Let the muscle play

Da geht dir die Pumpe - Makes your pump go wild

The abbreviation for adults with congenital heart defects in German is EMAH (Erwachsene mit angeborenen Herzfehlern)

[favisdisabled]

Sky from Beetlejuice has a congenital heart defect!

Disability only flag edits below

Requested by Anonymous

[cynicalone94]

A summer day in the backyard takes a turn. Jay will need the support of his family to get through this battle.

Chapter 13 is now up!

Read on Ao3 or below the cut.

They get the call before Jay has even finished the antibiotic from the pneumonia.

The insurance company has finally signed off on the surgery.

Apparently the data from the ECG that Dr. Lee had made sure was hooked up for the duration of his hospital stay with the pneumonia was the last straw.

They’ve been convinced that the chances of them being forced to pay out big in a civil suit are good enough that they’d rather just pay for the surgery.

Jay had to finish the course of antibiotics but today all four of them were in Dr. Lee’s office for a checkup to make sure he’s healthy enough to schedule surgery and to sign paperwork.

There will be a few more appointments for blood work and scans but two weeks from today, they’ll be back here for the surgery.

She’s never been so simultaneously relieved and terrified in her life.

He needs this.

She knows he does.

Both because the forced inactivity is driving him up the wall and because she can already tell that it won’t be enough forever.

It’s been worse since his bout with pneumonia.

They’re getting to the point where even walking from the kitchen to the living room causes a difference in his breathing that she can spot if she’s looking closely.

He can’t even laugh at his favorite tv shows for long.

He’s started taking a daily nap again and doesn’t even fight her on it.

Half the time, he falls asleep on the couch before she comes over to send him off to bed.

Worse yet, he’s miserable.

He can’t do any of the things that he wants to do and he feels awful all the time.

It’s affecting the rest of them too.

Pat and Will no longer go out to play in the yard either out of deference to Jay’s feelings.

Will goes over to friend’s houses to play sometimes and she or Pat make a point of taking him to the park or something once a week – to make sure he knows that even with all of their attention on Jay right now he still matters to them.

That they still love him too.

But even that is done cautiously and with a certain level of guilt knowing that whether Jay is watching them have fun without him or just knows about it they are rubbing salt in the wound.

So this needs to happen.

Should have happened a long time ago.

But even knowing that, she’s terrified.

Dr. Lee has talked over the procedure with them a little bit before letting them sign the paperwork.

Explaining the layers of skin, muscle and bone they’ll have to cut through.

Talking through some of the potential complications.

Making sure they realize that this will require stopping his heart, putting him on bypass so a machine can do it’s job for it while they place a patch over the hole, and then restart his heart.

And she needed to know these things, to fully know what she was agreeing to but she so very didn’t want to know these things.

Doesn’t think she’ll be able to sleep through the night without dreaming of Dr. Lee telling her that he’s ‘very sorry but something went wrong’ for a long time.

But they’re doing this.

And she has to hope that everything will be okay.

The next two weeks are a flurry of preparations and appointments.

Lists of dietary restrictions after the surgery – many of which they were already following – and shopping trips.

They’re planning on setting up the living room as an infirmary of sorts for when he comes home to avoid the complication of the stairs to his bedroom and they’ve been shifting some furniture to accommodate that.

They’re keeping Will out of school the day of the surgery, figuring he’ll be too stressed and worried to focus anyway.

But neither of them thinks that sitting at the hospital waiting for news is the best thing for him either which has left them trying to decide who will take Jay and who will stay home with Will.

As an added complication, the hospital doesn’t allow children under twelve in the intensive care units so it will be several days after the surgery before Will can see his little brother.

Dr. Lee has talked to someone in the pediatric cardiac care unit and once Jay’s been stepped down to a room there, they will let Will come in for a little bit.

Which leaves her and Pat to figure out how long to wait.

Because while the hospital policies are in place mostly to keep curious fingers from disrupting vital monitoring and support equipment – they have to worry about potentially traumatizing their oldest son.

The longer he has to wait to see his little brother, the more his mind will run away with him.

Convincing him that either they’re lying to him and Jay hadn’t survived the surgery or that something is horribly wrong.

But they also want to get Jay to a point where the sight of him won’t terrify Will and leave him with nightmares for years to come before they reunite the brothers.

They’ve agreed to play things by ear but Will isn’t happy about not having an answer right now.

The day before the surgery, a thoughtless nurse adds further complications to matters by talking about their poor family and the ugly scars that he’ll have in a hallway where Jay can hear her.

He’s inconsolable for hours; sobbing apologies for how much trouble he’s causing despite their attempts to assure him he’s done nothing wrong.

They have to get him on oxygen because all the crying is reducing his oxygenation levels.

Dr. Lee issues a stern reminder to all of the nurses about thinking about what they are saying and who might possibly overhear.

Bridget gets her son tucked in early that night, pressing kisses to his forehead and telling him that she loves him more than anything.

A few hours later, he’s standing in the doorway to her and Pat’s bedroom.

“Mama?” He calls softly.

She and Pat both sit up, turning to look at him.

“What’s the matter, baby?” She asks.

“Can I sleep with you tonight?” He asks, voice shaking.

“Come here, kiddo.” Pat says, lifting the covers and he hurries over scrambling onto the bed and settling in between them.

“It’s going to be okay.” She says, stroking a hand over his soft hair.

He nods but doesn’t say anything.

Will joins them a few minutes later.

It’s a long time before any of them manage to fall asleep.

@itsdesiree86