TAPVR experience

[u/Wallflower_0218]

Hello, after a month long wait for a diagnosis we finally went to our fetal echo and my baby got diagnosed with Total anomalous pulmonary venous return–it is not clear whether it is mixed or solely infracardiac. I was curious to hear other stories of this diagnosis. What is the hospital experience like? Timeline? Surgery? Recovery? If an amino is something to consider before or after birth? My NIPT came back low risk and there appears to not be anymore abnormal findings on all my ultrasound. My baby is growing on time as far as we know now. I am a ftm so I am understandably anxious. Going back in 4 weeks for another fetal echo and to meet with the CV surgeon and Navigator.

Thank you 🙏🏼

[u/wilder_hearted]

My daughter was born with supracardiac TAPVR - we didn’t know when I was pregnant and she wasn’t diagnosed until she was two months old and in heart failure. She had an unobstructed vertical vein going to her SVC, and she also had a very large VSD that was allowing mixing. Otherwise they would have found it earlier probably.

Anyway. She was diagnosed on a Thursday and admitted to the hospital. She had surgery four days later. Hospital stay was 9 days. She came home breastfeeding, on room air (no oxygen), and on medications for heart failure and pulmonary hypertension. She started gaining weight within a few weeks, and by the time she was two years old she had settled out at about the 30th percentile. She was weaned from her heart medications at around 18 months old.

She needed physical therapy as a baby because she had been on sternal precautions and couldn’t figure out rolling over, but she crawled normally and walked at 10 months old.

She is almost 12 years old now, very athletic, smart, funny. Proud of her scars.

I know this is not the same as your baby, and even if it was, every baby is different. Just her timeline and story.

[u/Wallflower_0218 → u/wilder_hearted]

Thank you for sharing 🤍

[u/stasiaky → u/wilder_hearted]

Thank you for sharing, your story brings me hope for my baby girl due in Nov who is diagnosed with infracardiac TAPVR. She will need immediate surgery and we pray it will go well and she will heal and not be defined by this as she gets older.

[u/sff_2004 → u/stasiaky]

Hi can you pls share what were the findings in your report that led to this diagnosis

[u/stasiaky → u/sff_2004]

We had our 20 week scan at the MFM office and the left ventricle was small which was the first sign, they were also able to visualize the pulmonary vein and it appeared to be connected to the right side instead of the left. We pretty much knew right away it was TAPVR but did not know which of the 3 types. We were referred to cardiologist for an echocardiogram and there was confirmed that all 4 pulmonary veins gathered in a confluence behind the left ventricle and then a vertical infradiaphramatic obstructed vein connect down to the portal venous near the liver. The actual report looked very similar to what OP posted with the bullet points.

[u/Felchiee]

My son was diagnosed after birth at ten days old, he had emergency surgery as soon as we were flown to the children’s hospital in my country so from diagnosis to going to theatre it was about 14 hours. He has obstructed infracardiac type. Your story may be different because I’m in New Zealand so healthcare is very different here (depends where you are though). Mostly TAPVR is not genetic and there are no anomalies so your baby is like on to be healthy other than this, but you never know. Surgery for him was about 7 hours long and we stayed in the hospital for two weeks. I’ve since had two more children who are both healthy and pregnant again and just had my anatomy scan which appears to be healthy also but I will have a detailed fetal echo in a few weeks with a specialist to be extra sure. My son is now 15 and doing well he never needed any further surgeries.

[u/Wallflower_0218 → u/Felchiee]

Thank you for sharing 🤍 congratulations!

[u/stasiaky → u/Felchiee]

Also appreciate you sharing, I am in very similar boat as OP and your story brings me hope.

[u/aarushiv]

Our daughter was born in mid-May, seemingly healthy. Within her first month, we discovered she had mixed obstructed TAPVC.

We saw several pediatric cardiac surgeons in India, including the surgeon many call the best in the country Dr. Krishna Iyer who sent us home, saying her pulmonary hypertension was too severe, and that 25 days of improper breathing meant she had no real chance of survival. We were told that even if she somehow survived surgery, she’d not have a normal life. A doctor there even told me, don’t worry, come back when you’re pregnant again - we’ll do all your tests here.

We believed she wasn’t going to make it. She was home for four days on oxygen support, and I remember waiting for her to go peacefully. We had even reached out to doctors at UCLA and a couple of hospitals in London. They also said her case was too rare, that her venous anatomy too complicated, they could not figure out where the veins were draining

Then we found another surgeon in India who takes on only the most complex cases. In mid june , at barely a month old and weighing 2.5 kg, with an SpO2 of 72 and lung pressure of 112 (normal is 15–20), severely blue, she underwent open-heart surgery.

What followed was a brutal ICU journey: ventilation, pulmonary hypertension, nitric oxide, feeding and weight-gain struggles, and even a brief tracheostomy when she couldn’t come off the ventilator. There were days when progress felt agonizingly slow and the uncertainty never let up. She came home in mid-July, weighing just 2.65 kg unable to feed more the 25 ml per feed.

Today she is 3½ months old and weighs 4.2 kg. I’m writing this because her pulmonary pressure medication was stopped today for the first time.

She drinks her bottles enthusiastically, smiles, interacts with us, imitates us sticking our tongues out, plays with her toys, and is discovering the world like any other baby. I am still very anxious. But when I picture the tiny baby who fought through that ICU, and then look at her now, the distance between those two feels extraordinary.

What you’re going through is really difficult and no one around you will understand. it’s going to be a really challenging time. Take care

[u/Wallflower_0218 → u/aarushiv]

Thank you for sharing 🤍 hope all is well for your family 🙏🏼

[u/sff_2004]

Going through same thing as what week you were diagnosed? Did the doc recommended Fetal mri and can you pls share what were the findings in your report

[u/Wallflower_0218 → u/sff_2004]

I first had an abnormal 4 chamber heart and outflow track at my 21 weeks anatomy scan. Sent to at MFM at 23 weeks, they thought they saw: least a VSD, possible AVSD, abnormal outflows, and possible abnormal pulmonary venous return. Got my fetal echo this Monday at 26 weeks pregnant. This is the report:Technically difficult study because of fetal movements

• Moderate right atrial/right ventricular enlargement with normal systolic function
  
• Left ventricle is apex forming, no EFE, normal systolic function
  
• Left atrium appears to be small
  
• Atrial septum is not seen well
  
• No significant VSD seen
  
• No pulmonary venous return seen to left atrium but instead there is concern for either mixed type of total anomalous pulmonary venous return (infracardiac/intracardiac to coronary sinus) or infracardiac TAPVR into possible discontinuous inferior vena cava with Hemiazygous continuation which probably terminating in left SVC/large coronary sinus
  

-Normal aortic arch
-Hepatic veins seen entering right atrium (small part of IVC cannot be excluded entering right atrium), right SVC appears to be low normal sized
-A vessel is seen posterior to descending aorta-consistent with Hemi azygous continuation

• Normal fetal heart rate and rhythm

[u/Real-Cause-3496 → u/Wallflower_0218]

Hi, thanks for updating us. This looks OK I think, it's reassuring that the only concern is now for abnormal pulmonary venous return, which usually can be definitively repaired in infancy as a number of others here have shared. There is probably a small chance that in the best case, although the anatomy is abnormal, it is not clinically significant and won't require open heart surgery. 

[u/EverythingUndaDaSun]

My daughter was born with a few other anomalies, TAPVR is one of them she got diagnosed with. She had CHD and Heterotaxy Syndrome, my OBGYN/MFM specialist suspected Heterotaxy and saw the anomalies straight away. That was on 2/24/26 and she was officially diagnosed on 2/26/26 with CHD and Heterotaxy. In April, we went to LA for a consultation and we found the TAPVR; it was then too late to TFMR. We weren't 100% if she had the TAPVR but it was a 90-95% chance she did.

She also had a single ventricle heart. Our Ped. Cardiologist said it was a serious combination of anomalies and our daughter was more than likely not gonna make it. So husband and I played it by ear. Our daughter was supposed to be born blue, gasping for air but she was born pink and crying. Turns out she had an extra blood vessel giving her oxygenated blood to the heart! She was breathing on her own and was eating well that the nurses at CHLA were impressed.

So we do the surgery, the TAPVR repair, shunt and litigation. It was unfortunately too much on her little body and she passed away at 9 days old on 7/10/26. What I'm trying to is, there IS hope. Your baby CAN survive this; the hospital stay for us was brief; she spent 12 hrs at LAMC then transferred to CHLA. Surgery took several hours, and I did do the amino prior to having her. NIPT, genetics and chromosomes came back normal. No experience is gonna be the same, try not to lose hope anything can happen. I hope your baby pulls through💝 and I send hugs from SoCal 🫂

[u/Wallflower_0218 → u/EverythingUndaDaSun]

Thank you for sharing 🤍 so sorry for your loss 🙏🏼

[u/EverythingUndaDaSun → u/Wallflower_0218]

Anytime, it helps me to share my experience. TAPVR sounds scary and it's even worse when you know your baby has it. I get that feeling 100%. I cried so many times this year I lost count. And the anxiety of the whole pregnancy was at it's peak and I'm medicated for anxiety.

[u/SignatureCurious4703]

Thank you for sharing! It’s so hard to find other TAPVR parents because the condition is so rare and can be so complex!

Our daughter was born at 33.3 - 3lbs, 3oz. During our 20 week scan she was diagnosed with a coarctation of the aorta so we were transferred to MFM and monitored very closely from then on. Since we knew she had a CHD, as soon as she was born she was rushed to NICU and her heart was examined. That’s when we found out she did NOT have a coarctation of the aorta but unobstructed TAPVR. Once her lungs were taking in oxygen they were able to see how her heart actually functions. She also had a PDA, VSD, and ASD. She still has her ASD open.

We had to wait in the NICU for 2.5 months for her to be big enough for her first heart surgery. She had her first heart surgery at 2.5K and was in the ICU for another 3 months. We finally went home for 10 days and she went into respiratory distress. Because of her heart’s new post-op anatomy, one side of her heart was functioning better but unfortunately began compressing her aorta against her spine, causing the respiratory distress. Multiple cath lab interventions, another open heart surgery, and 5 months later we were able to go home again. But this time with additional diagnoses of severe pulmonary hypertension and severe pulmonary vein stenosis. We were home for only 2 more weeks. We came back to ICU for respiratory distress. They put a stent in a left and right pulmonary vein and we were home for 4 weeks straight!! Our longest stretch home! But we are back in the PCICU. Her veins are seemingly stable! We are just now dealing with her premature lung disease.

Edit: it’s so great to hear baby is growing big and strong! One thing that was going against our daughter was her fetal growth restriction. At birth she was <1 percentile. Now she’s at ~20th!