Anatomy scan results- heart defect

JamieH2000

Hi all-
I hope it’s ok I have a seperate thread. I just was hoping to get any feedback if anyone has been through something similar.
At our anatomy scan, we felt something was maybe off because the tech took a long time getting images of the heart. Then the MFM came into scan (like they always do) and told us he was pretty sure there was something not working right with the pulmonary valve. They got us in the next day for a fetal echo with the pediatric cardiologist. This confirmed baby has pulmonary valve stenosis, which he was was critical level bc hardly any blood was getting through. This is ok in utero but as soon as baby is born a vein closes elsewhere and this needs to be fixed within 1-2 days of birth. So the bad news is this is considered a severe heart defect and we have to transfer all care to the children’s hospital and the birthing hospital attached. But hopefully it’s fixable with a ballon procedure right after birth. In rare cases, surgery could still be needed. 

It’s just been a lot to take in. Anyone else know anyone with this diagnosis? I’m just nervous they will find out things wrong too. We have feral echos every 4 weeks now. This defect is normally sporadic they said but sometimes is associated with some genetic syndromes (which NIPT can’t test for). 

Anyways, sorry to have been MIA. I’m processing and feeling more hopeful, just terrified of getting pre e again and having to go early. This baby girl needs to be term and strong for her heart procedure. 

savedbygrace1213

@JamieH2000 I don’t really have any advice/ experience with this. Just wanted to let you know that I’ll be here praying for you and baby girl . 

Did they say that if it is something that could still have a chance of developing over the next 19-20 weeks? 

rgn12

@JamieH2000 it’s absolutely okay for a separate thread! I do not have any direct experience with this particular issue, but just wanted to let you know that I’m praying and sending good vibes for you and baby girl. It sounds like the doctors have a good plan in place, and I hope that future scans/echos show the best possible scenario! ❤️❤️

mockingjay1

Oh @JamieH2000, I'm so sorry to hear this. I don't personally know anyone that's had kiddos with this specific diagnosis. It sounds like they are watching your baby girl SO close, so hopefully if anything else is abnormal they will catch it. Do you guys live close to the children's hospital? Hoping you are able to avoid pre-e again, or at the very least make it much closer to term before having to deliver. Thinking of you.

JamieH2000

@savedbygrace1213- thanks!! I asked if it could possibly correct itself and they said no so now I’m just settling on hoping for no other complications and a smooth procedure after birth!

@rgn12- thanks friend! Yes I am going to be in very capable hands and we are very blessed they found this so early!

@mockingjay1- we are lucky our children’s hospital is only 35 mins away (my other hospital was 30) so feeling fortunate on this for sure!!

j-to-the-amie

@JamieH2000 sorry to hear this!  Must be stressful with appointments and the worries. It is great that they are monitoring you often and glad the children's hospital is close!! That would have added even more stress if you had to travel far distances each time. Perhaps you should also post in a different area of Community like 2nd Trimester or somewhere there may be more people looking and can relate.  I can imagine it would be nice to have support from someone who has or had same condition.  My only advice..and it is of course easier said than done.. is to just continue doing the things you are doing to continue to be healthy and focus on what you can control at this time.  Wishing all the best!! 

RDFree32

@JamieH2000 Praying for you all! Sounds like you have a good team of doctors, so that's nice.

PYLWhammy

I’m sorry to hear this, and can understand feeling overwhelmed- it’s very big news! It’s good that you are feeling more hopeful and have a very good medical team looking after you and baby 💕. I’d recommend checking out Facebook if you haven’t already (if you use FB, that is) I imagine they have support groups where you can connect with other parents who have babies with the same diagnosis.

kaitcrystalline

@jamie2000That's very stressful news to hear so I'm glad your sitting with it a little better. Like others mentioned, your doctors seem to have a good plan in place and I agree that facebook is probably a good resource to use to find similar support groups. Thinking of you and baby girl. I hope everything goes smoothly over the next few months. 💜

brookert615

@JamieH2000 Sending all the love! I know someone who had a baby boy a while back that had to get heart surgery right away. He is healthy and thriving!

bkjade

To echo what others have said, I don't have any experience with this diagnosis but I am sending all of the  your way. I'm glad they were able to detect it early and give you time to prepare, but imagine that it must be really difficult as well. We are here to support you in any way we can! 

melbel0824

Just here to echo what others have said and send you lots of love and peace. I know of three different kids who all were born with congenital heart defects and had to have surgery immediately and they're all three thriving. The knowledge and care we're blessed to have these days has come so far. 

JamieH2000

You guys are so kind. I really appreciate all the love and support. I’m doing my best to try to take it day by day and not let the anxiety spiral. I don’t meet with the new cardiac team until 24 weeks, so I have 3.5 weeks to go. Ugh. Just hoping to start feeling babe move a little more consistently so I have some reassurance she is doing ok 

scaredunprepared

@JamieH2000 I am sorry you're going through this.  I am thinking of you and praying for you and baby.  Hoping for guys news from the cardiac team!  

loquacious123

@JamieH2000 I am so sorry to hear this, but it sounds like there is at least a plan in place to make sure she is ok. I have a family member whose baby had the same diagnosis and her now 6 year old is just fine. Wishing you the very best.

rpreston17

@JamieH2000 hang in there Mama! I can't imagine how scary that must be but sounds like they have a good plan in place! Sending lots of prayers and good vibes your way!

JamieH2000

HI All- thought I would post an update here, just in case anyone is triggered by this stuff.

Unfortunately our follow up echo gave us more bad news, that wasn't really on our radar. 

It looks like the pulmonary valve is likely completely closed and this makes the right ventricle chamber narrow/not develop right. We went through all the range of options of what could happen, and we won't really know a path until baby is born and they can do a cath dye procedure to map out all the flow of the heart.

The most likely outcome is that baby will need a procedure/surgery within the first 1-2 weeks to put in a tube/shunt to keep the blood flowing right. Its looking unlikely that a simple balloon cath procedure would work. This means probably 3-4 weeks in the hospital after birth. Depending on how things progress, its likely we would need an open heart procedure (Glenn procedure) at 4-6 months and then another open heart procedure at 3ish years (Fontan procedure). With these procedures, baby girl should be able to live a normal full life, until adulthood when complications arise. At this time, the only cure in adulthood is a heart transplant, thought science will hopefully evolve in the next 20-40 years. THis part really got me. Its just beyond overwhelming. And hard to not know what to expect.

I'm trying to adjust my short term reality that December will be a long hard month. and that likely we will have a very scary surgery at 4-6 months. I will be having fetal echo's every 4 weeks and going in at 28, 30, 32 and then weekly for scans and checks. 

Appreciate all your prayers. I'm still praying a miracle to somehow avoid this likely path.

RDFree32

Now I know what specifically to pray for! I hope you find a little comfort in knowing you have people who care, support, and pray for your family. 

bkjade

@JamieH2000 - I'll be thinking of you and your family as you navigate all of the uncertainty. That sounds extremely difficult - please let us know if there's anything at all we can do to support you through all of it, even if it is just posting here or needing someone to chat with. 

melbel0824

I'm so sorry that wasn't the news you were hoping to hear. If there's anything you need from us, even just to vent and express your worry, we're here for you. 

j-to-the-amie

So sorry to hear this! That must be very difficult for you and your family.  Definitely take it day by day and try not to get too caught up about the future... like you say especially into adulthood, several things can change before then.   I know easier said than done but you will do everything you possibly can so best thing is to focus on taking care of yourself as that  is what baby needs most at this time. 

mockingjay1

I'm so sorry you didn't get better news. I've been thinking about you and your sweet baby girl. I can't imagine how overwhelming learning all of this is. Praying for you guys. Please know we're always here to vent or for whatever you need. 

rgn12

I’m so sorry. Thinking about you, and echoing what others have said we’re here for you whether that is just to vent or chat. ❤️

kaitcrystalline

I'm sorry your family didn't receive better news. That's so tough. I was thinking about you yesterday. We are all here for you and will be throughout everything. Please let us know whatever you need. Praying for your little one ❤

JamieH2000

Thanks again all for the support and love Doing my best to take it one step at a time!

prpl11butterfly

I am so sorry to see this! I can't imagine how scary it is. I think taking it day by day is all you can do for now. Sending all the hugs your way.

rpreston17

It's so much easier said than done, but taking it day by day is the best way to do it. The future can be so scary and so much can change! Sending prayers! 

brookert615

I am so sorry you're all going through this. Will definitely keep your baby girl in my prayers!

scaredunprepared

I am just catching up now.  I am so sorry about more bad news.  I will be praying for you and baby girl and will be hoping for a miracle!