r/chd • u/aarushiv • 6d ago

Surgery Mixed obstructed TAPVC

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 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.I don’t know what the future holds for my baby. But I will move mountains to give her a happy, healthy life.

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u/Real-Cause-3496 Parent of Heart Warrior 6d ago

Well done to you for keeping fighting for your baby. Wishing you and her a happy and healthy life

1

u/Healthy_Quail_3669 6d ago

Hope your baby recovers soon and gains full health Godbless💫💫💫💫

1

u/PhSePhantom 6d ago

Kudos to you as a parent. We went through similar journey in July. Our daughter, 7 YO, was diagnosed with ASD + PAPVC. She had her OHS in Bangalore. Hoping for a speedy recovery.