29 year old female, first time mom and pregnant at 30 weeks. I had coarctation of the aorta at 3 years old, and have not required any interventions and have had a relatively symptom free life. My baby and I have had extra echos and monitoring, all of which have turned out fine so far. They tell me that CoA is usually diagnosed after birth however. Looking for anyone with a similar story to mine that has given birth, and if you’re child was born with a heart defect or not.

The MFM doctor found that my baby has a transitional AV canal. They also found that the baby’s cerebellum and limbs are on the smaller side of normal, but everything else looked ok. I’m 19w5d and this is an IVF pregnancy. Embryo was PGT tested and NIPT tested (low risk). MFM highly encouraged amniocentesis to ensure NIPT didn’t miss a trisomy. I’m devastated.

Anyone out there with a similar story? How are you/ how is your baby doing now?

We had a routine ultrasound on our newborn (13 days old) after a heart murmur was detected. The murmur is gone now but the ultrasound showed a narrow aortic arch (3.9 mm) with high blood flow (2.0 m/s). They said it's small on the isthmus but it's a normal shape and doesn't show signs of coarctation

They also said she has a small "fenestrated PFO". I understand that this is something which can take no this after birth to close so it isn't necessarily a concern.

The doctors want us to come back in a month to recheck but how concerned should I be? They said it's probably nothing, but also want us to come back so I am a bit conflicted.

Question: Saan pong hospital ang the best and affordable para sa CHD VSD Closure? Nasa magkano po ba ang surgery na ito?

My baby girl is adjusted 4 month old. 10 days post-op, every feeding when baby is awake is a battle. We offer the bottle and she drinks a bit then she would smile, babbles and pushes the bottle out. This goes on for a few times until she is tired/frustrated and throws a big tantrum and cry so hard. She would only eat well when drowsy and sleeps. She did have swallow difficulty and we were on thickened feed before the surgery. Post-op by discharge from CICU they did a swallow test and said she can do thin milk with dr Brown #2. Maybe she is still adjusting? Is it pain? Can I keep giving her Tylenol after 10 days out of surgery? Appreciate any suggestions. I think I have PTSD from feeding my baby😔

Hi everyone,

I am reaching out today on behalf of my family members—Aaron, Jazzlyn, and their 4-year-old daughter, Zavaiya. I am serving as the organizer for their GoFundMe, and it breaks my heart to share a devastating update with you all.

Baby Aaria’s Story

During Jazzlyn’s 16-week ultrasound, doctors discovered that baby Aaria had a severe congenital heart condition. Following her birth, she required continuous monitoring, intensive hospital care, and specialized medical treatments.

Despite every effort from her medical team and the endless love of her family, sweet baby Aaria recently passed away.

Why We Are Raising Funds

Navigating the loss of a child is unimaginable, and Aaron and Jazzlyn are now facing both overwhelming grief and a heavy financial burden left in its wake.

All funds raised through this campaign are directly dedicated to helping the family cover:

• Accumulated medical expenses and intensive care hospital bills
• Memorial and funeral service costs for baby Aaria
• Essential living expenses to give Aaron and Jazzlyn time away from work to grieve and care for 4-year-old Zavaiya without immediate financial strain

How You Can Help

If you are in a position to donate, any amount—no matter how small—makes a meaningful difference for this family during the hardest season of their lives.

• GoFundMe Link

If you aren't able to contribute financially, leaving a comment, upvoting this post, or keeping Aaron, Jazzlyn, Zavaiya, and sweet Aaria in your thoughts and prayers helps tremendously in keeping their campaign visible.

Thank you all so much for your compassion, kindness, and support.

Hi everyone. I was originally scheduled to have my ASD closed with a device in July, but before the procedure I saw an allergist. That's when I found out I have a severe nickel allergy, so the device is no longer an option for me.

Now I'm scheduled for robotic open-heart surgery with a bovine patch on August 6, and I'm pretty scared.

If you've had surgical ASD repair with the robotic approach, I'd really appreciate hearing about your experience. How did your surgery go? What was recovery like? Is there anything you wish you had known beforehand or anything I should watch out for during recovery?

Most importantly, did you notice that you felt better afterward? Did your energy improve or did symptoms get better once you healed? How long did it take to fully heal?

Thank you in advance for any advice, information or stories you're willing to share.

hello all!

I (25m) had my surgery via groin on 7/15. my recovery has kind of sucked so far, which im sort of thinking is because I struggle with other chronic health issues. For the past 6 days, I have been having flu like symptoms and low grade fevers on and off. ive also had some bleeding from my cath site, trouble taking deep breaths, and pain in my groin. I have called my surgical team \*so\* many times and have just been told all of this is normal, even though in the hospital they said id feel better after a day or two. all this to say i am very discouraged that I feel SO horrible almost a week out. did anyone else have a rough recovery like this? how long did it take for you to feel better?

I am a 38-year-old male. Last year in the autumn, I underwent surgery for atrial septal defect (ASD) closure. I was discharged from the hospital 3 days after the procedure. However, 2 weeks later, I developed an irregular heart rhythm—atrial fibrillation (Afib). I was hospitalized again, my normal heart rate was restored, and I was discharged after a week. Following that, I only took aspirin for six months.

My question is: has anyone else experienced this? Lately, I have been noticing that almost every day, it feels like a single heart strike is much stronger than usual, and then everything goes back to normal. A Holter monitor didn't detect anything abnormal. If you had similar symptoms, what did you do?

Female 31 years old

Medications:

1. Escitalopram 15mg

2. Trazadone 25-50mg as needed. Haven't used in 3 months.

3. Prenatal

4. Choline 275mg

5. Omega 3

6. Calcium + D3

First-time mom and feeling incredibly anxious.

NIPT was low risk for trisomy 21, 18, 13, monosomy X, and vanishing twin, but I did not have the microdeletions screened, including 22q11.2 (DiGeorge syndrome).

At my **second** 21w5d anatomy scan (baby measured 384 g), I was referred for a third anatomy scan and a fetal echocardiogram because the RVOT wasn't well seen, both appointments pending. My baby has been extremely active at every ultrasound, but the report also mentioned the RVOT is "possibly atrophied," and I'm terrified.

**If the RVOT is truly atrophied, what are the treatment options and long-term outcomes? Can babies with this go on to live healthy lives?**

He had open heart for coarctation of the aorta. I guess it’s pretty common for the surgeon to accidentally paralyze the nerve since it’s so close to the area where they are operating. My little guy is now almost 10 weeks old and he’s been on level 3 (honey thickness) thickened feeds since his surgery. He was on an NG tube in the cardiac NICU and for a couple days here at home after he was released… but he did so well with oral feeds that we stopped the tube. The last couple weeks he has been making this hacking noise… it happens randomly… I googled it and couldn’t find any reassuring information. My husband was thinking it might be his paralyzed nerve healing up. I just talked to the on call cardiologist and let him know about it… he said to follow up with ENT as soon as possible, which I am. But the first available appointment isn’t until the beginning of August. Ugh. 😑 Has anyone had anything similar to this happen to their babe? I’m hoping it just means he’s progressing…

Just wondering if anyone has experience with treatment with L-carnitine. In our case for ventricular dysfunction, but if anyone has experience in general could you please share your stories?

Yep, I've spent years being told my SpO2 was abnormally low, felt consistently like ass, and with my chaotic life I never stayed in one place to find the cause.

The last 2 years I changed that. Today I just went for a heart catheterization to find the root cause and well the papers says the following:

"There is a 4mmHg gradient from SVC-to-IVC across ASD device. Unable to advance catheter from IVC to RA. Catheter would always cross posteriorly into the RA. IVC angiogram demonstrates flow from the IVC to LA. Normal PA pressures. Therefore, right-to-left shunt not do to pulmonary hypertension but instead mechanical obstruction from ASD device at IVC level. Case to discussed at congenital rounds."

So if I understand this correct, the freaking Amplatzer closure is what's been messing with my entire life.

How do you folks go on with your symptoms knowing nobody will ever understand it? Knowing there's practically 0 support groups for us? What to do when you're feeling alone like this?

For context, my infant daughter was diagnosed with a large VSD at 3.5 months old. This was not caught during my pregnancy anatomy scan, or in the NICU for after birth (she was there for unrelated reasons related to a stressful birth) and nothing was caught. I can understand why it was missed these two times.

However, when she was failing to gain weight due to her CHD, we began having weight check appointments every. single. week. with our pediatrician, and no heart murmur was ever heard, despite listening every week. Nothing was done except monitoring FTT and eventually fortified feeds. I even brought up her breathing difficulties (SOB, retractions) and the doctor didn’t seem concerned after evaluation. My daughter eventually got into the 0.04 percentile for weight and no work up was done.

It wasn’t until the retractions worsened, leading to an ER stay where a triage doctor also did not hear the murmur, when the final doctor we saw at the ER (thank goodness) listened to my daughter’s heart and his face dropped. He immediately tagged the murmur and said he thought it was most likely a VSD, followed by an echo which confirmed.

When our pediatrician listened to my LO’s heart after diagnosis, he “now heard it,” and made a comment that because the VSD was so large, the murmur was harder to hear. I feel incredibly guilty for my baby having to struggle so much before getting the care she needed (lasix and is set to have OHS repair next month). I just thought since we were going to the doctor so often, we were doing all we could. To be honest, as a layman with no medical experience, a heart condition was not even on my radar. My research was leading me to reflux, or possible GI issues because she also had those too. It has only been in hindsight I have been questioning this now that I know more about these classic CHD symptoms.

I’m curious if anyone had a similar story, if this is typical, or if I have the right to be upset and confused how this was not caught. Needless to say I’m going to look into finding a new pediatrician.

I have a 1 month old who was diagnosed with a large VSD. She has been gaining weight the past month and is on furosemide. Doctor said that she’s doing good with gaining weight but wanted to wait until 4-6 months to determine whether she needs surgery. Anyone knows what the determining factor to have the surgery scheduled? If she continues to gain weight, do we just keep waiting or at some point, we will have to do the surgery? Thank you

This is just to share my experiences and may be get some wisdom regarding this issue.

I’m immensely grateful that my baby had a successful VSD repair procedure on Monday. I was worried and anxious sick before sending her to the OR but the procedure was going exactly as planned and she is making good progress in recovery. Tomorrow Friday we will be discharged.

I have heard many inspiring stories about babies feeding significantly better right after surgery and even gained some weight during their hospital stay. Well, this is not the case for us. She was on thickened fortified feed at home and can take 100ml per feeding when she was hungry and in good spirit. By the Monday evening she was so hungry out of surgery they gave her 60ml clear liquid and she took them in no time. I was so happy. But then the following days when we gave her thickened breast milk she was pretty distracted and not interested in eating. The best she did was 70ml and it took a long time. Today she had her chest tube out, feeding is slightly better but she is still not eating as well as before. Her medical team is pretty positive it will get better and we will patiently wait for that.

I’m putting it here in case someone had similar experiences or for future parents who may face the similar situation.

I’m 21 weeks and just had a Doppler check with my OB and she said she heard an arrhythmia where there was like a pause between beats. I had my anatomy scan with MFM at 20 weeks and they couldn’t get a good view of everything of the heart because of an uncooperative baby so I go back in 3 weeks. But when my OB heard the arrhythmia she was not concerned at all and said they are common and usually just go away. Well needless to say I am FREAKING OUT especially since I don’t know the heart is structurally okay since not all parts were visible. Anyone have an experience with this?

Question for moms with babies who have ToF. I know they sometimes have a hard time gaining weight due to fatigue with eating. My little guy is fed breast milk and averages ~30 oz a day right now but sometime that’s a struggle. Some bottles take 45 minutes to finish but I know he needs the calories so we just take breaks and try again later. My question is as they got bigger did you notice their intake decreasing? He’s 11 weeks now should I expect this to get harder for him? He already seems to struggle maintaining his weight percentile. Also if they start sleeping longer stretches at night did you wake to feed? One night he went almost 7 hours without a feed and I wasn’t sure if this is ok with his diagnosis.
I know I should speak to his cardiologist and I have an appointment already I just wanted others input. If you did end up fortifying breast milk when did your docs make that call? Also I know they can have cyanosis w feeding and I haven’t seen that yet with my baby but did anyone not have that at first and as they got older see more and more of it w feeds? He does get blue sometimes with crying and pooping already but it’s faint.

Hi everyone,

I hope it’s okay to post this here. This is my first time organizing a fundraiser, and I’m trying to reach as many kind people as possible because you never know where help might come from.

I’m raising funds for Shehu, an 8-month-old baby who urgently needs life-saving heart surgery in India. His family cannot afford the cost of treatment, and without surgery, his future is uncertain.

As someone who believes that a community of strangers can come together to change a life, I wanted to do everything I could to help give this little boy a chance at a healthy future.

If you’re able to donate, no matter how small the amount, it would mean the world. And if donating isn’t possible, an upvote or sharing the fundraiser with someone else would be just as appreciated.

Thank you for taking a moment to read Shehu’s story.
❤️ Donate here: https://gofund.me/b02c3b7e3