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Baby with PH 6 days old
Hi Mike I was diagnosed with PAH my great grandson six days ago was born and they diagnosed him with pH Will it go away or will he have it all his life
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2 Replies
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Hi Mike, I’m sorry to hear about your PH; now, your great-grandson was diagnosed with PH at birth. My heart goes out to you and your family. However, I wish I could offer you answers. I wish I could tell you it will disappear as he ages. But I can only offer you my thoughts, prayers, and encouragement.
I’ll share a few links that you may find helpful where others shared their experiences with their young babies with PH. Of course, feel free to browse the topics in the Pediatric subforum, which will offer many other experiences.
https://pulmonaryhypertensionnews.com/news/more-than-50-premature-babies-with-ph-respond-to-revatio/
https://pulmonaryhypertensionnews.com/forums/forums/topic/baby-with-ph/
Are you and this little one the only ones in your family with PH, as far as you know? It sounds like this could be Familial PH. I know of several young babies who are now young adults with PH. They have endured challenges along the way, but they are the bravest of our PHighters and an inspiration. I would encourage your great-grandson to be seen by a pediatric PH specialist. This will make sure he has a knowledgeable team taking care of him.
Also, my apologies for the delayed response. I tried responding to you on Wednesday but lost my reply somehow. It’s been one of those long Monday weeks, hehe.
Thanks for sharing, Mike. Again, I wish I had more positive news to share. How is the little guy doing this far?
pulmonaryhypertensionnews.com
More than 50% of premature babies with PH respond to Revatio |...
Intravenous Revatio can improve heart health in some premature babies with pulmonary hypertension, but more than 40% don't respond.
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@Mike Zivich , my heart goes out to you. It’s hard enough receiving your own diagnosis but now to have a baby born with it in the family, I know, is so hard to come to terms with.
My son became symptomatic at age 6 and was diagnosed when he was 8. I have an understanding of what it is like to have a PH child but I can imagine an infant makes the diagnosis even more challenging because they can’t tell you how they are feeling.
If you feel comfortable having your grandchild’s parents join our forums, please invite them to. We are here for patients and caregivers of all ages.
Here is a link to a Facebook group I have belonged to since my son’s diagnosis. A fantastic group of parents are members. I would suggest sharing our forums and the FB support group with your grandson’s parents.
Families of Children with Pulmonary Hypertension
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