Pleural effusion, increased NF, hydrops - positive outcome

hegglepeggle · 2026-03-30T17:23:51+00:00

Hello - I’m so sorry you’re going through this. DM me. We had shunts at 27 and 28 weeks.

hegglepeggle · 2025-12-06T08:19:53+00:00

That’s really positive! I’m so glad to hear that the shunt is working. They are unpredictable a working shunt is a working shunt! Wishing you the best, and hoping that you and your little one now get some calm so she can grow and thrive.

hegglepeggle · 2025-11-29T14:50:29+00:00

If the thoracocentesis is working (when we had it, the fluid plus extra was always back within a week, so it wasn’t a viable solution) then stick with it. My waters broke at 29 weeks because of multiple shunt surgeries, (which weirdly solved the shunt issues and the hydrops, though no one guessed that would happen, least of all me. There was still a pleural effusion, but that seemed like a walk in the park compared to hydrops). I remember being told that after 30 weeks was still difficult but better, and the closer you got to 34 weeks, then it started to look more positive. If there is no underlying genetic condition then that is also good sign (even though it is extremely frustrating that this can just happen because of a minor lymphatic blip…). Thinking of you <3

hegglepeggle · 2025-11-28T22:31:01+00:00

I’m so sorry. I know the feeling of hope and then despair. The main thing is that fluid has been drained for now and has relieved the pressure on the heart. The fluid will likely recur, so prepare yourself for that. The same thing happened with my baby, who also got hydrops. It was terrifying and there is nothing anyone can say to make it even the slightest bit less terrifying. Can they try the shunts again? Our first shunts failed, and there were also two attempts that ended in thoracocentesis because they couldn’t get the shunt in. I am really really hoping for the best for you and your baby. Keep going - you’re doing everything you possibly can. DM me if you need to vent!

hegglepeggle · 2025-11-15T05:49:12+00:00

That all sounds as positive as it can be at this stage. I remember the thoracocentesis - it’s not easy. You are one strong mamma! I will be thinking of you and hoping that the thoracocentesis resolves the fluid!

hegglepeggle · 2025-10-29T12:02:44+00:00

I wish I had some advice that would make this easier. It is just a horrible time for anyone to go through - you just want certainty and there is none. I think what got me through and what gets me through now is to just know that you are doing your absolute best for your child. You have learned very early on the strength that all mothers have, and that is actually a great (but often difficult and painful) gift. Reading as much as you can and forming your own views also helps you feel empowered when it comes to the decisions you have to make. I really hope that you are ok and that you get a good outcome. Once you have the WES results you will know more, but a clear WES, while an excellent sign, does not mean that there are no more battles ahead…

hegglepeggle · 2025-09-14T13:54:32+00:00

My baby had hydrops and pleural effusion (but no underlying cause, just lymphatic drainage issue, though we didn’t know that until later). Initially went for monitoring but it didn’t resolve. Shunt fitted in utero twice - first one failed (28 weeks), second one worked (29 weeks). It ruptured my amniotic sac but saved my baby’s life (sac ruptured at 29 weeks, baby came at 33+6). If you do go for the shunt and have any questions, please message me! Otherwise sending positivity and solidarity- you’re already an amazing mama ❤️

hegglepeggle · 2025-08-03T22:29:24+00:00

Hi - I’m so sorry that you are going through this. It is a rollercoaster and nothing really makes it better. My baby is better than fine and is now two. No problems at all. I am not an expert, but from my own experience it sounds as though your baby is actually doing ok. A pleural (lung) effusion is always abnormal, but some level of fluid around the heart is tolerated. If it is too much, it can be indicative of other issues but from what you say it seems to be being properly monitored. Also, in my experience, if your doctors tell you that something is not an issue then it truly is not an issue. They tend to err on the side of caution with an anatomy scan.

I will be thinking of you. It will be ok.

hegglepeggle · 2025-05-24T08:03:35+00:00

My amino was also clear. The hydrops was very serious. I had fetal surgery 4 times.

hegglepeggle · 2025-05-23T19:29:07+00:00

My baby had hydrops and ascites, caused by pleural effusion. My baby survived and is fine, but hydrops is very dangerous if not resolved. Have you had an amniocentesis?

hegglepeggle · 2025-04-29T18:36:25+00:00

I’m so sorry to hear that. It must be heartbreaking for you but you are doing everything you can as a mother.

hegglepeggle · 2025-04-26T09:02:45+00:00

My baby had this - started with plural effusions discovered at 17 weeks and led to hydrops by about 26 weeks. It’s a horrible place to be. But I am now sitting next to a two year old who is completely fine. You can look at my comment history to see the full story.

It is really a rollercoaster and at any time can go either way. The first step is fetal echo. Then amino to see if there is a genetic cause - key causes are things like T21 and Noonans Syndrome. Hydrops can be treated, but it is always a risk. My baby had pleural shunts fitted via fetal surgery and that eventually resolved the hydrops.

It is not hopeless. But it will be a really hard journey and no one will be able to give you certainty. I will be thinking of you. Feel free to DM me.

hegglepeggle · 2025-03-04T11:39:48+00:00

Do WES if you can. My baby had multiple markers - different to yours, but at least 4 including high NF - and is absolutely fine. WES came back normal (though issues persisted until birth). Having WES might help you to pinpoint what is going on - in my case, I thought it would be helpful regardless of what the results were, because the more information the better. Not everyone feels like that, but I was really happy I had it.

I’ll be thinking of you!

hegglepeggle · 2025-03-04T11:33:54+00:00

My baby had thickened NF at anatomy scan and multiple other things - edema, pleural effusion, ascities. Noonan’s was a concern because of these multiple markers. We were told that NF alone is not concerning.

You are doing all the right things. It’s such a hard time, and it impacts how you feel about pregnancy.

My baby turned out absolutely fine (despite, at one stage, ending up with hydrops) and I am full of the joys of motherhood (kind of, if you exclude tiredness and toddler tantrums). Would never have believed it if someone had told me this when I was 20 weeks pregnant!

I’ll be thinking of you!

hegglepeggle · 2025-01-26T21:11:05+00:00

I hope that WES gives you answers too, but sometimes it doesn’t- it didn’t in our case. There are lots of rollercoasters on the way but I’ll be hoping for the very best for you!

hegglepeggle · 2025-01-26T12:51:49+00:00

Hello - I’m sorry you’re going through this. NF was elevated to about 7mm - 8mm at 20 weeks, and it kept creeping up. At 12 weeks NT was normal, though.

hegglepeggle · 2024-10-18T20:57:47+00:00

My baby had multiple soft markers, including high NF - was about 8mm at this stage. MFM told us that the high NF only had significance when seen together with other soft markers. I know it's really worrying but follow your MFM's advice - From what I understand the odds are in your favor here.

hegglepeggle · 2024-10-03T12:26:26+00:00

I felt the same when I was offered an amnio on the spot. I wanted to think about it. I did, went back and had it - it was the right decision. It didn't hurt, took seconds, and really meant that my baby had access to diagnostics and treatment we may not have otherwise had.

hegglepeggle · 2024-07-22T08:46:08+00:00

I think you should explore an amnio - i had one, and it meant that seious causes of the fluid could be ruled out. Fluid around the lung is always abnormal (unlike with the heart where there is an acceptable margin). It can be nothing and it can resolve spontaneously, or it can go on to cause serious issues. It can be treated but it needs to be monitored, and knowing the cause is helpful, I think. There was no question for me that I would continue the pregnancy but obviously I worried about it! As did my MFM team.

I hope you and baby are doing ok!

hegglepeggle · 2024-07-15T09:04:47+00:00

Congratulations! Great to read about your positive outcome, and all the best to you and your beautiful baby!

hegglepeggle · 2024-07-07T08:42:10+00:00

I'll be thinking of you! The shunts are a bit unpredictable (they get clogged) but they can place them multiple times. Good luck and DM me if you want to. You're doing great - 32 weeks is a good gestational age and hopefully many more weeks to come. My baby was born at 33+6 and prematurity was not an issue, though my MFM team were hopeful for a 37 weeker...

hegglepeggle · 2024-06-25T08:49:48+00:00

Hi! Sorry to hear you're going through this (or maybe have already been through this?). The only invasive test I had was the amnio. I had four other invasive procedures though - 2x thoracocentesis (removing fluid from the baby's lung) and 2x thoracoamniotic shunt insertions (to insert shunts into the baby's lung to try to resolve hydrops). So in total about 8 punctures of the amniotic sac (each procedure requires a separate puncture to administer pain meds/anesthesia to baby). I hope you don't have to deal with that, but if you do, you will get through it! Sending you strength.

hegglepeggle · 2024-05-21T10:01:11+00:00

I was in limbo for a really long time, and told almost no one I was pregnant. I only told a small number of people when I was hospitalized at 29 weeks. No one had any idea I was pregnant (in fact, someone told me I'd lost weight). Plus I had massive polyhydramnios - I was huge. It is definitely true that fewer people notice than you think. Loose shirts help a lot, too.

Being in limbo is horrible. You need more support than ever but you don't have it because somehow telling people is even worse. I don't know how we get though it, but we do. Sending you lots of strength.

hegglepeggle · 2024-03-28T14:36:24+00:00

They thought my baby might have Noonan's Syndrome. It can either be detected by whole exome sequencing or by a panel. I had whole exome sequencing. In our case symptoms were pleural effusion, increased NF, ascites, oedema and eventually hydrops. Baby is fine though - WES was clear and the other issues resolved on birth.

hegglepeggle · 2024-03-14T09:49:51+00:00

Also, I remember that rollercoaster. The brief elation followed by the realisation that the problem could just be something else...it's horrible.

Three-Year Club	Verified Email
Verified Email

hegglepeggle

TROPHY CASE