My 20 days old diagnosed with VSD and ASD :(

[vgahdmi123]

Hi all,
my baby progress is really great, he gained 600 grams in 20 days, he is very active, eating, pooping and sleeping. We did not notice any weird things in behaviour and he is born with apgar 10/10.

However, today on routine checkup, pediatric noticed heart murmur. We are sent to cardiologist who diagnosed VSD (2mm) and ASD (9mm).
He said VSD will heal on its own 100% since it is too small, but we need to be careful regarding ASD.

His official medical report is: Situs solitus, normal heart rate, normal veins, tromobosis, no malformations. Visible 2mm defect in perimembranous area. Also in foramen ovale continuity damaged up to 1cm.

We did a fetal echocardiogram in 24th week of pregnancy and all was normal with no defects found. These news today schocked us even more due to that.

Doctor did not seem concern, but we are shocked and after reading a lot of things about ASD and VSD we are concerned that our newborn will need a surgery to live. Does anyone have experience with similar diagnosis?

Surgical repair for VSD and ASD is almost routine, if open heart surgery can ever be considered routine.

My dd's VSD was almost 1 cm. There was no murmur (as you get with a hole-in-the-heart) because the blood was just sloshing through. My dd was monitored very carefully for the first 4 months of her life but she gained very little weight. The paediatric cardiologist made the decision to operate. When they opened her up, they could see her heart was very strained. She was on her way to congestive heart failure if they had not intervened surgically.

The recovery was quick. It looks horrific post-surgery with all the tubes but I don't think my dd was in pain. She recovered quickly and I could pick up her surprisingly soon.

She has never looked back since the surgery and leads a normal physically active life. We have never regretted the surgery. She needed it and got it early in her life before her heart was permanently damaged.

I wish you and your baby all the best. Of all the heart conditions, VSD/ASD is one of the most easily fixed.

thanks a lot, this is encouraging.
do you know what are the chances that ASD almost 1 Cm heals on its own?

Cardiologist said that VSD will heal since it is 2mm only.

Not sure what to think about ginecologist who did not notice anything during the pregnancy and cardiologist who did fetal echo cardiogram at 24th week.

Can I ask why you did open heart surgery since I am reading that today they do it by inserting small tube through the vein and getting into heart to fix the hole.

I think it was not a slam dunk that the hole needed surgery to fix. The doctors regularly did ultrasound scans to monitor the progress to decide whether to let dd grow a bit more and operate later if needed. But her progress was not good enough so finally dd got seen by a senior cardiologist (bless him) who made the decision to operate immediately. She was operated on very quickly after that decision. I would say it saved her life or quality of life. The ultrasounds can only tell so much. It was only after they operated that they realised dd's heart was really struggling to send enough oxygen around her body.

I am no medical expert. Your baby's VSD looks small enough to heal on its own but a large ASD, like your doctors say you need to be careful.

My dd's problems with her heart was picked up at 13 weeks antenatal scan but they did not narrow down the actual problem until she was born and they could see more clearly with the ultrasounds. You were spared the anxiety and uncertainty of having the heart condition diagnosed in utero. I was told dd could have a chromosomal defect that was not compatible with life to serious heart defect. I was constantly scanned during pregnancy. Stressful does not even come close. It requires quite a skilled radiologist to pick up these defects. I fortuitously happened to be scanned by someone being trained by one of the pre-eminent fetal cardiologists in the country who was visiting my relatively small hospital. When the scans were showed to other doctors, those doctors agreed they would not have been able to pick out the defect. My subsequent ultrasound scans by the professor was standing room only so filled it was by doctors in training. It also depends on the machine. Some machines see more clearly that others. Only the largest teaching hospitals have these machines.

Maybe that is why your baby's heart defect was missed.

May I ask how the doctors discovered the VSD and ASD after birth? Was it is heart murmur?

Open heart surgery was the only option for closing dd's VSD. The procedure you are describing (inserting small tube through the vein and getting into heart to fix the hole) is called catheterization, I think, does not work for a VSD. Mechanically, I struggle to see how it could. To block a hole that is almost 1 cm, it is unlikely that the tube will be able deliver a balloon that is big enough to cover it. The pressure between the chambers in a heart is also relatively enormous to be able to pump blood around the entire body. The pressure itself would dislodge whatever is not stitched on.

Sorry, I am not a medical expert. Best to ask the doctors what the options are for your dd. Googling causes anxiety. Hard to resist, I know.

I told you not to google but I just did.

I stand corrected.

"A transcatheter repair, also called transcatheter device closure, is usually recommended for an atrial septal defect. During this procedure, a pediatric interventional cardiologist makes an incision in the groin, inserts a catheter, and funnels a small mesh patch through the catheter and up to the hole in the heart. Over time, the child’s own heart tissue grows over the patch"

Unlike ASD, VSD is more commonly repaired with open heart surgery. Open heart surgery is only necessary for ASD that cannot be repaired with a transcatheter device.

That is great news. Transcatheter repair is much less invasive and there won't be a 'zipper' scar.

Ultrasound miss up to 50% of defects, it isn't infallible unfortunately.

My eldest was born with a 5mm ASD, heald by itself by 3yrs of age.

My youngest has a rare congenital heart defect along side a large outlet VSD 14mm.
It was repaired with a patch during OHS at 2 weeks of age, success rate of these surgeries is between 90 - 95%, essentially routine and very safe in terms of outcome.

Because babies grow so quickly they will want to do frequen echos, every 3-6 months and perhaps a catheter procedure to see how her Pulmanory arteries are holding up.

If surgery is needed and everything goes smoothly then you won't be in for more than 5days to a week.

The good thing is that she is feeding well, the most common complication for heart babies is that they sometimes struggle to put weight on as their bodies are working harder to function and certain surgeries have better outcomes with a bigger baby.
But this isn't insurmountable, just a preference by medical teams/surgeons.

The British Heart Foundation has a wealth of resources and reading material that should inform and reassure you including personal stories of people that have experienced the same as you and your daughter.

https://www.bhf.org.uk/?&&gclid=CjwKCAjwivemBhBhEiwAJxNWNwvo0OJK9qvbGtrDGkJvW7_uyvRhvO3c1jt45cDF1e7gIi00koFA5hoCIZgQAvD_BwE&gclsrc=aw.ds

It s very positive that it has been picked upon infancy.
This means they can monitor it and if needed repair. If the hole doesn't not close they will close via surgery. The cardiologist consider this surgery routine as they repair holes daily and compared to the other heart surgeries it is straightforward.
As a parent it is a worry and feels a million miles from routine.

They will likely repair via catheter or via open heart surgery. The consultant will advise on which is most appropriate in your situation.

We were initially told catheter by the pediatrician (non heart specialist) who referred child to children's hospital cardiology. In our case the defect had been missed at many appointments and child older then yours. The first hospital referral was classes as non urgent and we were told as catheter would likely be done around age 9 when child was heavier.
However, when we were seen by the cardiologist this changed to OHSas the specialist said it couldn't be repaired via catheter. We also were pushed up to more urgent surgery.

Several years since surgery and health is much better. Prior to surgery the heart was very enlarged in the right side. We have been told that the heart is now not enlarged.

Left untreated there was high risk of heart failure in adulthood. As your child heart condition is known they will operate if needed and so the heart will be repaired and there shouldn't be any lasting effects.

If/when surgery goes ahead it is extremely difficult for the parents but the children bounce back unbelievably quick. And the hospital teams are so good these days with onsite play therapists, and other enrichment activities in the ward.

When you know about surgery timescale it is worth ordering a gown from pyjama fairies charity. They provide gowns for hospital stays (just postage costs)

Clothes suitable for hospital stay / surgery?
(UK based)

Hi, our little one has a large VSD and PDA and needs open heart surgery soon. Wondering if anyone else struggles finding suitable clothing for hospital? We need clothes that are easy for all the tubes and wires to come out of, as well as clothes that are easy to get him in and out of during his recovery. I'm finding that clothes with poppers are all under 6months and have feet (like sleep suits), which aren't suitable for the summer.

Are there any particular brands or clothing types that you can recommend?

Hi OP, what a shock for you, especially when your baby is so healthy. I can understand how upset you are about it not being detected during pregnancy. This is a bit of info about the ASD your baby has - a patent foramen ovale https://www.pennmedicine.org/for-patients-and-visitors/patient-information/conditions-treated-a-to-z/patent-foramen-ovale#:~:text=Definition,after%20a%20baby%20is%20born.

Essentially, the reason it wasn't detected before birth is that it is present in every baby before birth and only becomes a problem when it doesn't close on its own in the first few days after birth.

Lots of people have a PFO without knowing and never find out, or only find out when it causes a problem. It's actually really good that your baby's has been detected early so that they can be monitored and it can be fixed before it causes any problems.

I know it's really worrying, but please try and enjoy your baby and trust the doctors that your baby will be absolutely fine.

Veganmama, sorry that your baby has to undergo open heart surgery. On the bright side, this has been picked up early and he is going to be better and thriving soon. They do say it is worse for the parents than the baby, so try to hang in there.

In terms of clothes, no need to buy anything. There will be a lot of tubes and wires so the baby recovers in their heated incubator cot just wearing a nappy.

Once the tubes and wires are removed, your baby can just wear normal summer baby outfits but preferably soft clothes with no waist band

@blueshoes yeah it's definitely worse for us, he'll probably bounce back fine. Thanks, that makes sense. I didn't even think about heated incubators. Just trying to prepare myself as much as possible (3 weeks to go)

@blueshoes Just found out he won't have a heated incubator as he's over 6months so he'll have a cot. But nappies and sleepsuits should be fine

@VeganMama2023

Pyjama fairies. They provide gowns and pyjamas for children in UK. It's a charity so they just ask for postage

https://pyjamafairies.org/

They are really lovely

@Againlosinghope that's great, thank you!

Pajama fairies looks brilliant! All the best Veganmama and hope your son's hospital stay is short and uneventful.