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Baby with PH
Hello, I wanted to share my sons story and see if anyone else has gone through the same and how their little ones are doing now.
My son was born at 38 weeks, weighing only 3lbs 12oz. He had IUGR during pregnancy
He was born on 12/1/2020, stayed in the NICU for three weeks, where they became suspicious of PH. He has a VSD as well. At first they thought it was the VSD causing the PH. He was sent home with oxygen and an appointment to have a cardiac cath about a month later.
He had his cardiac cath on 1/19/21 and they told us that they didn’t think the VSD was the cause of the PH. We’ve had several genetic tests done and nothing has come back on the tests.
He is now on remodulin infusion, bosentan, and sildenafil. After a 3 week stay, he is finally home. His team tells us that his VSD will need to be repaired in a few months and that they expect the PH to get better..
I guess my question is, if anyone has gone through the same or similar, how are your kids now? Did they get better after VSD surgery? Did they get weaned off meds and oxygen? Do they still take meds?
It’s been so difficult searching for answers and only seeing negative articles on Google that make me feel so scared. I am hopeful that my baby will get to live a normal life after we get his pressure under control. It’s been a very scary, lonely time and I just wanna hear everyone else’s stories too. Thanks so much in advance!!
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6 Replies
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Hi @zperez, I wish I had more to offer you. I am a long-term PH patient, just now 16 years.
Maybe other parents can get you in contact with other parents of your kids. I would think that having a VSD surgery would help; it may be something that they try and wean down the meds and oxygen after.
This is what I found, and it makes sense if this was corrected so that the blood and oxygen can flow through. But, this article may be helpful for now.
Welcome to the PH forums, so sorry that you are dealing with this. I know this must be overwhelming. We are here to support you. Others with PH kids may chime in. @colleensteele, anyone you know that maybe we can connect her with?
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@zperez I somehow missed this post and would have responded much sooner. I’m so sorry!
I see that you live in CA. Is your child being treated at LPCH or another facility? My son’s PH care was at LPCH-Stanford and he received his transplant there, that is why I am asking.
My son was diagnosed when he was 8 so I don’t have experience with PH in babies. I can tell you though, sometimes PH is idiopathic, meaning there is no known cause for the PH. My son went through genetic testing and no markers presented, it wasn’t caused by a co-existing condition or a medication – his PH is idiopathic.
I am aware of children who have had the VDS surgery and are doing well. They still have PH but treatments are providing a better quality of life.
I hope you will stay with us here but I also want to suggest a “Families of children with Pulmonary Hypertension” support group that I have belonged to since my son’s diagnosis. I think chatting with all the other mom’s there might be helpful and I know many of them have the VDS experience. Do you use FB? If you do, click on my name @colleensteele and send me a private message with your FB name and I will send you an invitation to the group.
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Hi @zperez, I wanted to follow up to see how you are doing. Did you find any resources that helped you with this new journey?
How is your son doing? Did he have the VSD surgery yet?
Please let us know how we can best support you as you advocate and learn new things to help your son.
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I wanted to share this recent article for the parents of babies with PH. This may offer some hope and less invasive treatments for newborns.
The article says, “The use of the hormone vasopressin successfully stabilized symptoms associated with pulmonary hypertension (PH) in newborns, and avoided the need for more invasive treatment approaches in some infants, according to data from 10 cases.”
What are your thoughts on this treatment if you have a baby with PH?
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@jenc thank you for sharing this article! Parents of PH babies have a special place in my heart. Cullen was 8 when he was diagnosed. I can’t image having a baby with this disease. Must be so hard when they can’t tell you what is wrong.
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So true, @colleensteele. I was stressed and wasn’t great with my pediatrics rotation in nursing school. I felt they couldn’t voice their needs. I feel so bad for them; they broke my heart daily. The parents were so concerned and unable to help, too; so heartbreaking when tiny ones are hurting.
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