r/chd

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.

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😔

I know since 26 weeks pregnant that my baby is mosaic TS (mos 45,X[36]/[46,X,i(X)(q10)[29]) so partially a monosomy, partially an isochromosome (that's the karyotype I received after my amnio at 23w) I was overwhelmed but accepted it fast, since the doctors couldn't see anything else wrong with her (except she's on the smaller side, around percentile 13).

At a mfm scan 2 weeks ago the doc said her aorta looks a little off and referred me to the best doctor for fetal echocardiograms, and I went today...and the diagnosis of CoA was confirmed. Truly I've never been so devasted in my life, I can't stop crying since this afternoon 😭

It's my third child and my favorite motherhood thing is breastfeeding, I adored it with my first 2, but if she'll have surgery, I don't know if I can keep up with pumping until she's well enough to nurse herself. (My let-down at pump was always so bad, I couldn't get anything down, only the baby could).

I feel so bad all over again, I just accepted the TS dx, but this feels too heavy and too real 🥹

Do any of you have positive stories about CoA to share?

I'm terrified I'll be a wreck, waiting for her to come home ... (I live in Eastern Europe, the capital of my country, they have good hospitals but not one where they operate newborns in the same building with the maternity, so she'll have to go with an ambulance to a special heart hospital for babies). The specialist told me today it's possible she won't need surgery, but the numbers did look bad for the moment 🥹

I also have so much to manage with my 2 other kids, this year they both have tough school years, the eldest with exams and such, and I wanted to be there for them, but instead, I'll be a trainwreck.

Tbh this pregnancy was a total surprise at an older age, but I thought it's a blessing. All these problems just hit us in full force and I'm not ready....

Hello everyone I’m new to this community. My baby was born last October and after a month in the NICU at one of the Children’s Hospitals in California, he was diagnosed with a very rare metabolic genetic disorder idh2 type 2. This was a new genetic mutation confirmed to not have been passed down by dad or myself through genome sequencing. He suffered from seizures and it was discovered that his heart was severely dilated. They said the right side was normal but the left was so big and that it barely even rocked. His ejection fraction at one point was less than 10%. He was started on this medication by the metabolic team that they have used on the 2 other kids that have the same rare condition that the hospital is treating and it has shown some improvement in their cardiomyopathy so they decided to give my baby that med. The medication basically normalizes the toxic acid from the bad gene and reduces seizure frequency, improves social function and heart function. My son was sent to CHLA back in November and he was denied a heart transplant because of his developmental delay, seizures and underlying mitochondria disorder. The hospital told me to tell my family and other 4 kids that we need to celebrate Thanksgiving and Christmas early because he wasn’t going to make it. He was never coming home is what the words were to me. To nurses and doctors surprise he was stable enough to be discharged almost 6 months later home on hospice because his heart is still weak and I don’t know what to do. He has outpatient appointments with the specialists from the hospital and everyone is like surprised that he was able to have his NG tube removed and now drink from a bottle again, something they said he would never do again and he is not having anymore clinical seizures but his heart is just not improving. They tell me to just increase his cardiac meds or switch them and come back in 4 weeks. Today’s visit the cardiologist just told me again that his heart function is scary and it’s barely squeezing and it’s more about how he looks and he looks good to her. She said she is just so surprised at how much he has compensated. She said his heart is severely depressed and I guess what I’m asking is would there be another hospital that would take him as a candidate, I have 4 other minor kids and I just want to know if there are other doctors that will help him with a transplant or another option that can help his heart instead of just giving meds and seeing how things go. He is now 9 months old and he is really fighting but I don’t feel like doctors are helping much. He was discharged from Children’s Hospital of Orange County.

26M, ToF/DORV survivor, second surgery at 20YO for severe RVOT obstruction, surgeon did a double barrel procedue, native pulmonary valve and annulus preserved but the valve itself is bicuspid, what can be the expected prognosis?

Ever since becoming a mod, I’ve been wondering ways to help this sub be a useful tool in the belt of CHD patients and families.

I’m currently working on a “master list” pinned post that can help to direct folks in the direction of useful tools, offer a template for titles to help posters get the best feedback, and go through some commonly found acronyms here.

If there’s anything you feel should be added to this pinned post, please let me know! I’m hoping to post it in a week or so.

We’ve also seen some posts and requests for gofundme links. While i personally don’t mind them, i know many communities stay away from allowing these types of posts. I’m hoping to get some opinions on this. Perhaps we can do a weekly “gofundme” post, or i can add to the pinned master list a section for financial resources.

You all helped me so much and i hope i can return the favor. Please help me to help you as best i can :)

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…

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.

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?**

My daughter is currently 8 months old, the ultrasound tech seen that my daughter had (double bubble) on my 20 week anatomy scan which is duodenal atresia. When she was born they quickly realized she also has anal atresia specifically rectovaginal fistula (meconium passed through vagina due to connection). She had duodenal atresia repair at 2 days old and a colostomy put in place. Around 1.5 months old she had anal atresia repair and at 3 months old a colostomy reversal. We spent 53 days in the nicu mainly because she had a feeding/swallowing issue which she needed a milk thickener! She was also seen by echocardiography because she has an extra vein pumping oxygenated blood to the wrong side of her heart causing it to work harder! She also has to be seen by urology and neurosurgery for having a sacral dimple (tethered cord) and most likely will need surgery for untethering! Overall she’s a healthy and happy baby, she just has some complications! It’s a rough and emotional road but becomes manageable with time! If there’s anything I should know about tethered cord correction please inform me so I can be prepared!

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.

First time parents. We’re just about 30 weeks and found out at around 25 weeks that our baby has VSD and will need surgery after they’re born. This baby has been particularly hard to image as every time we go in for a scan they have their hands over their chest or are in a complicated position, so our plan right now is to do an echo once they are born to determine the severity and when to schedule their surgery. The drs do know based on the location and size that it will require surgery (I know not all VSD requires surgery), but until they can get more exact details on if baby’s VSD includes aortic override or TOF they want to wait to make a surgery schedule.

I know VSD is decently common and many babies tolerate the surgery well and go on to live happy healthy lives. I think for me right now I’m most stressed about the time between birth and the surgery, and keeping baby safe during peak cold/flu/RSV season (due mid/late Sept). We’ve already told family they have to be up to date on vaccines, not showing any sickness symptoms etc. to be around baby. And I know VSD babies tend to struggle to put weight on pre-surgery which makes me nervous about breastfeeding.

I’m just looking for positive experiences and any encouragement from other VSD parents. What your surgery timeline looked like, how life pre-surgery was, how recovery went etc. Just trying to get a picture of what newborn season will look like for us.

Regardless we are so thrilled to have the sweet baby and to care for them no matter what the season looks like, they are a very strong kicker and let me know multiple times a day they are doing just fine in utero haha

Hi everyone

I used to have another account that apparently got lost so here I am with a new one.

Last year I had a MMC at 10 weeks discovered at 13, and now I am pregnant again with a boy (just discovered 🩵). I spent the last 10 weeks overthinking every symptoms with total terror.

Today I went to 1st trimester scan and fetus measured perfectly 13 weeks, NT was perfectly, risk of trisomies super low (confirmed by NIPT).

Only thing, the heart rate. The maximum the doctor found was 140bpm, he measured again 30 minutes after and still was between 137 and 140. He told me that’s below the 5th percentile and I need a fetal echocardiogram in 3 weeks

When I saw the fetus I thought the worst was behind me but now I am spiraling again.

Any success story?

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.

My 9 month TGA guy has a balloon catheter procedure tomorrow. It is his 2nd or 3rd and won’t require an overnight hospitalization. He has no symptoms of SVG, fortunately, and the pressure gradient is not emergent.

Despite myself, I am really nervous. He’s my baby 🥹

Just looking for some cheerleading.

He had a rough start (preemie at 33 weeks and a twin), but he’s a chubby happy babbly silly rockstar these days. No one knows he was so sick from looking or interacting with him, which is incredible.

But this brings me back to the terrifying early days. :(

Just curious...

How long would you wait to allow family/visitors to meet your newborn who has CHD?

Would you allow toddlers or other kids around them right away?

Would this change if the newborn didn't have CHD?

Edit: I'm asking because my baby has mild aortic stenosis and our family is in an uproar over our visiting rules. I'm not budging but just curious what others have done.

Little backstory to give hope to parents who are dealing with children or infants with heart condition.

I was pregnant last year and my pregnancy had been a piece of cake for me. Not even a single nausea no discomfort, all my reports and anomaly scans came perfectly positive. I went into labor at 37 week 6 days pregnant (full term) and my delivery was as smooth as possible. It was unmedicated vaginal birth. Everything looked perfect and I was told to be discharged within the same day. Until 2 hours later my lactation consulted noticed my daughter’s hand purplish. She wasn’t sure if it was right thing so she called nurse to check my baby’s oxygen level. The oxygen wasn’t going above 80. Within a span of a min there was a team of doctors who took my baby to NICU and ran some tests. All tests came out negative indicating nothing was wrong. The last test was the echo test to be done. And that one report changed our life , I remember crying in agony and had so many questions.

Then came the hunt for hospitals in UAE. Since I delivered in different hospital and only 3 gov hospitals in UAE had pediatric cardiac NICU, and they had to accept our baby’s case. But unfortunately all the NICU beds were full. I went home without my baby. I fell in depression to a point I wanted to stop breathing. I would constantly think about my baby in nicu with all the mask on her tiny face. I wasnt sure if I would ever hold my baby again (I only got to held her for 2 hours after birth). I had to ask for permission from nurse to touch my own baby.
For 3 days the running back and forth kept going , so many calls , so many mails , so many people came to help , so many prayers when finally on the 4th day one of the biggest gov hospital in Abudhabi accepted our case. My baby as transferred in ambulance (which in return after transferring her the ambulance lost control due to tire blast, God was watching over my baby :))
The surgeon informed us that due to baby being underwent (she was born 2.5 but due to NICU journey she lost to 2.2) they couldnt go ahead with the surgery and she would be kept in nicu for 2 months until she would gain enough weight. The hospital was 2.5 hour away from me so I would drive back and forth almost everyday just to see my baby while still recovering from vaginal stitches. On the 8th day after birth we went to see our baby just a routine visit, we were informed that the surgery was happening tomorrow. We asked the doctor how and why , he simply answered the baby is ready , I’m ready let’s do it. The next morning I remember team of doctors telling us all the things that could go wrong and asked us to sign papers (how can you sign a paper telling your baby might die of this this possibility, that fear kills you inside) I remember telling the doctor I need my baby back to me, whispering in her ear you need to come back to me. The surgery was suppose to be for 4 hours but it was completed within 2 hours it was an open heart surgery on a 9 day old Baby. She was transferred back to NICU and I saw her within half hour of the surgery. She was fighting anesthesia so they had to increase the dose. She had lost blood, so many bandages and pipes in and out of her.. we could barely see her body behind all that. But her color had changed.. she was pinkish. The doctors told us they will have to keep her for a week in NICU but she was moved to general ward within 3 days. They told us 4 days in general ward but she was discharged within 2 days. They told us medication would go on for a 1 month but they asked her to stop within 1 week of her checkup.

My miracle baby is 15 months old now with no limits to her braveness. She is a warrior. She has always been ahead of her milestones. She cant sit for a second, she is always running jumping … there is nothing that can hold her back. She is thriving!!

So hang in there Mama! The road might look difficult but you were chosen from god because no normal hearted person can bear this weight.
1 out of 10,000 gets TAPVC , what were the odds it was my daughter despite having normal pregnancy and delivery? God knew we as a family of 3 could do it. I am forever grateful for my husband to be the pillar of strength for me and my family.

HANG IN THERE! THERE IS ALWAYS HOPE!
I pray this journey ends for you soon❤️