Baby Diagnosed with Pulmonary Atresia with Intact Ventricular Septum

Hi @umirose, I am super glad you found Mayo Clinic Connect! You are in a great place to find support.

First let me say how sorry I am that your sweet baby is going through this. And you are too! A mom’s instinct to protect her baby is strong, and you have so much to cause fear and anxiety right now. You are his best advocate and you are taking a great step here to understand all you can. You can do this!

I am not familiar with this congenital condition that makes it hard for your baby boy’s blood to flow through his heart. I did find a couple of overviews you may find valuable to review as you wait for others to comment:
- Mayo Clinic’s Pulmonary Atresia Overview: https://www.mayoclinic.org/diseases-conditions/pulmonary-atresia-intact-ventricular-septum/cdc-20396714
- CDC’s About Pulmonary Atresria: https://www.cdc.gov/heart-defects/about/pulmonary-atresia.html

Mayo Clinic may be a good resource for you. Contact them here to find out how they may be able to help… http://mayocl.in/1mtmR63

I imagine you are trying to take one step at a time. What is next? How are YOU doing?

Thank you so much for replying and for the information. It gave me hope, just to see that someone cares. I’m okay. I’m going through a range of emotions but through it all, I’m remaining hopeful.

God Bless you and your baby. Hopefully the medical experts have thoroughly discussed all possibilities with you. Search the web for information. I got the following:
A baby diagnosed with Pulmonary Atresia with Intact Ventricular Septum (PA/IVS) is a rare congenital heart defect where the pulmonary valve does not form properly, blocking blood flow from the heart to the lungs. This condition can lead to symptoms such as blue or gray skin, fast breathing, tiredness, and poor feeding. Diagnosis may be made before birth through a fetal ultrasound or shortly after birth when the ductus arteriosus closes, causing cyanosis. Treatment options include medications and procedures to fix the heart, such as balloon valvuloplasty. Regular follow-up care is essential to monitor the baby's health and manage any complications that may arise.

Thank you for your blessings and for the information.

@umirose those questions you have should be discussed with the team of doctors, nurses and therapists who will be treating you. You’ll need to ask whether they’ll do the repair if necessary in utero or after birth. Mayo I’m certain has a team that can assist you better than we can.

Hello and good morning,
I wanted to update my post: My baby boy was delivered on December 10th and was in the cardiac intensive care unit for 20 days. He is in a step-down unit now, praise God, and should be discharged in a few days. He is doing well. I would say that his recovery is a miracle. He will always have PA/IVS, as it is not curable, but I believe that he will live a long life. Thank you all for your kind words and prayers. God bless you.

@umirose Congratulations, Mom! This is such great news. It sounds like your son is resting a bit better, and you must be exhausted. I imagine you are recognizing you are stronger than you thought, capable of so, so much more than you ever anticipated. You’ve got this!

If I am tracking correctly your son was born early. How are you doing now that you are about 3 weeks out from giving birth? What will your recovery look like, and how is your son’s care team coming together?