Handhold please

[enigma22220]

I'm writing this as a coping mechanism, it feels it's complications after complication with this pregnancy and I'm struggling. I'm still rational but having seriously dark thoughts.

20 weeks pregnant with MCDA twins, under KCH team. When I found out I wanted to terminate, but now I want them earthside safe and sound. From 16 weeks we were diagnosed with Siugr type 2 (i.e twin 2 is very small under 5 percentile, with missing end diastolic flow), I.e. they might be born at 26-28 weeks gestation. I had one week of joy last week when I was downgraded to type 1 (much better prognosis) as the EDF was positive but I'm back to type 2 at my scan yesterday. At the anomaly scan, twin 2 has an ARSA (abberant right subclavian artery), which in itself is not bad, but could probably indicate genetic issues. I had a private harmony test on the twins that have already ruled out any of the trisomies, so the only thing possible that twin 2 could have is digeorge syndrome.

Now, I need to make a decision if I need to have an amnio. Considering twin 2 prognosis isn't that great, I really don't want to do an amnio if I risk twin 2 gestation even more. And from what I read, the range of digeorge syndrome is from very slight to really life debilitating..... And I don't know what to do.

I don't understand that they are identical twins, why one had the ARSA and not the other. Has my hyperemesis drugs set them off this way? What if I done the amnio and I miscarried both of them? Also, when is it too late if I need to selectively reduce twin 2 to save twin 1?

I am also slightly jealous of the "trivial" issues other posters are raising on the forum. I know it's a me problem but I would give up years of my life have those issues instead in me needing to make life/death decisions about my twins. Issues of "why my baby is small" when the percentile is 20 percentile etc... Sorry, I am so so so angry and upset.

When I got the news yesterday, I was really suicidal and thinking of ending it all. I have no control of the situation and I cannot make the twins grow better. I think I sounded like a raving lunatic when I called the midwives this morning needing answers that they have come to check up on me.

I don't know what to do. I really don't know what to do.

Hey, this sounds incredibly difficult and I’m sorry. It sounds like mental health support is something you should be pushing for with your midwife/GP as this is very understandably a traumatic situation to be in and you want to be the best equipped you can in an impossible situation.

Your consultant team should be able to give you statistics and answers around the twins the way they currently present. There is no “right” decision here. You need to be as confident in the information as is feasible when making these decisions.

There’s not much you can do about others’ posts on the forum. For a lot of people those things ARE incredibly scary because the NHS notoriously gives us what seems like scary figures and sends us on our way.

I'm so sorry you're going through such an incredibly difficult time, I can only imagine what pain its causing you. As @doeandfawn says, the midwife team should definitely be helping with mental health support.

I know a lot of the issues on here seem trivial - it's important to try not to compare what's happening to others' lives. I got sucked into that a couple of years ago and only ended up hurting more. For those individuals their issues are still valid and still worrying.

I really hope you get the support you need. Definitely ask the midwives about who you can talk to in detail about making difficult decisions. You shouldn't have to do this on your own x

I have no advice to offer OP, but I am really truly sorry for what you're going through💐

My dd has DiGeorge syndrome (or 22q11 deletion, not sure if she actually qualifies for the full diagnosis). She was born with a cleft palate, vocal cord palsy and something else I can't remember! Later found out that she has aberrant right subclavian artery, but heart is normal in structure and function.

She's 16 now and has just finished her GCSEs today. She struggles with maths as many 22q children do, but other than that is totally unaffected socially, emotionally and physically.

I remember well the dark days of diagnosis (only discovered at her newborn medical). If only I'd been able to see into the future....

PM me if I can help.

I have no idea about the specifics of your situation.

But I wanted to let you know that I’ve recently had a complicated pregnancy under KCH (not to your extent, but I spent a lot of time as an inpatient). The antenatal team are amazing, and you’re in the best possible hands.