Chronic histiocytic intervillositis (chi) - looking for hope

[Charlotte390]

I've been diagnosed with CHI today and am already 10+4 weeks pregnant (PM took months and the preliminary one came back clear to we were told to try again).

Does anyone have any success stories after diagnosis? And any medications you were advised to take?

Currently on heparin and aspirin but wondering if I need to start steroids or anything else asap

Thanks

Hi, sorry to hear. How were you diagnosed? I lost my baby boy December 2022 at 24 weeks and was told it was due to CHI. Currently ttc, had early miscarriage in November and few chemicals and tested positive again today at CD26, don’t want to get my hopes up.

@AnnMii I'm so sorry, it's such a scary diagnosis after an already traumatic time. It came through on the final post mortem, which we were angry about because on the provisional one there was nothing mentioned and we were told they rarely change, so we decided to ttc again.

Are you in touch with an expert in London or Manchester? (Prof Williams/Heazell) There's also a Facebook group I've joined which is really supportive and lots of ladies who have had successful pregnancies on the various protocols. I can send you a link if not.

Currently waiting for my 12 week scan next Friday which will be the first since diagnosis/starting extra meds, so trying to stay positive and hope for the best 😖

It's horrible having so much uncertainty isn't it?!

@Charlotte390 aw sorry to hear. We had the same, it came back nearly a year later. At the beginning we were told everything was fine and baby was healthy. And then on the final report it said he died due to CHI. I had a scan one week after having Covid at 19weeks and everything was perfect and he was measuring on spot, but my bp started increasing rapidly. Then at 22 weeks I had anatomy scan and he was in measuring 19/20 weeks and was severely iugr. We were told it’s 50/50 changes that he will survive and he passed at 24 weeks.
They weren’t able to tell was it chi or was it covid that caused chi, but sent placenta for additional testing and it came back that they “think” it was chi not covid.
I do believe covid caused it, but the same time I don’t want to risk it, and now after so many chemicals maybe it was chi not covid. I’m still confused.
I live in Ireland, we don’t have as much access to specialists. Iv been referred private but still waiting on appointment over 3 months.
I was given list of meds iv to take from positive test, but I’m waiting for after missed period and solid test line to start them as incase it’s chemical again I don’t want to mess the cycle.
im in the Facebook group too, probably the same.

im do happy to hear your nearly 11 weeks, gives me hope. Please keep in touch. Xx

@AnnMii aah I see. As terrible as it is, I hope it was covid and you've just had some bad luck with the chemicals, I would have thought it would be unusual for CHI to take effect that early? But I have no idea to be honest. My fingers are crossed for you this time round.

I'm living in Spain now, so have had to print out and translate all the information I could find to give to doctors (with mixed reactions), which is frustrating, but I've managed to get prescriptions for hydroxycloroquine and Prednisone to add to my heparin and aspirin. Hoping it's not too late. I emailed prof Heazell for some information and he replied the same day so if you have any questions he could be worth contacting.

There do seem to be people who it's worked for so let's stay hopeful and know you're not alone in this! The anxiety is horrendous! I'll try to remember to update you here.

@AnnMii just thought I'd update you - I had my intrauterine doppler on Monday to check blood flow and everything was thankfully within the normal range, she's a girl and was measuring 5 days ahead :) I'm 18+3 today.

So now I'm starting to wean down off the steroids very slowly.

Think I've felt a few movements too, feeling quite reassured but I know I won't feel out of the woods until she's here and healthy!

Another update for anyone interested - happy to announce that my beautiful baby girl was born on by elcs at 37 weeks at a healthy 6lb 7. She was very active throughout the pregnancy so I was quite reassured by that and she is doing very well, and has been feeding loads.

Just some positive news in case anyone is facing a CHI diagnosis in the future and would like some reassurance!

Hi Charlotte, your post here is giving me a lot of hope! I currently received the postmortem report for my baby who died at 20 weeks earlier this year, it was devastating and we had to get pregnant through ivf. Knowing now I have this CHI diagnosed, it's so scary for us to go into the next round.

@Doralice Oh I'm so sorry for your loss. But I hope your diagnosis means you can get the right help going forward; I had a great consultant and lots of support. Are you in the Facebook group for CHI? It's a great community for hope and loads of people with different experiences/backgrounds, plus experts.