Struggling with news following anomaly scan

[Elderflower27]

I am currently pregnant and due in July. I received some difficult news at my anomaly scan a few weeks ago where we found out our baby girl has a problem with her leg which will mean she’ll have a physical disability. There will be surgeries when she’s born and potentially a full amputation. I’ve been struggling a lot since finding out the news and we did have a few weeks where we were preparing for the possibility of a 23 week termination if wider chromosomal issues were identified. This baby was very much wanted after years trying to conceive, multiple miscarriages and lots of hormone treatments so facing that decision was very traumatic.

While tests suggest an isolated issue, I’m still on edge that we’ll get additional bad news every time we have further scans. I’m being monitored closely for the rest of the pregnancy and I find my mental health takes a real dip every time I have a hospital visit. Part of this is seeing our baby’s leg on scans and trying to comprehend what life will be like.

Several of my close friends are pregnant and I have really complicated feelings of sadness and jealousy talking about our future babies. I am also due to start NCT soon and worried I’ll struggle with being around more pregnant people. I am also worried I will have difficulties bonding with our baby when she’s born or will find it difficult going to postnatal classes. I am trying my best to get back into feeling excited but I keep spiralling.

I have been referred to mental health services by my midwife but I’m still waiting on an appointment, the wait time can be up to 8 weeks I’m told.

I was wondering if anyone else has received difficult news during their pregnancy and how best to cope? Or anyone who has had a similar situation and how you found things when your baby was born. Thank you

That sounds very hard I’m sorry. I’m not sure what to say and don’t have a similar experience, but what struck me from your post is that you are already being an excellent mother. You are considering all the angles that might affect your baby and trying to work out solutions. To me that says, whatever happens, you will work out a way through.

I don't know if it's helpful but one of my best friends as a child had a double leg amputation as a newborn in the 90s. No-one would even know because he's been using prosthetics since he was a young kid. He can walk, dance and has a high flying career etc.

I'm very sorry that you are going through this, OP and I agree with everything @MontythePrince has said. I wanted to add that when baby is here, you may find your HV may be able to refer you to some specialist groups. Not quite the same situation, but DD1 had sepsis when she was born and a very tricky time in NICU. I then had very difficult PND as a result. My HV got me into an 8 week programme for mums with PND / babies who had been very prem / had health conditions etc. Basically everyone in the group needed a little extra support for one reason or another. It was a very nice group as we all understood that everyone had challenges. This group wasnt advertised anywhere and it was referral only, so I wouldnt have even known it had existed. I know some areas do HV calls / visits prior to birth so its something you could ask about nearer the time as it was a nice way to build confidence before going to a standard / public baby class. Good luck with everything 💐

OP ring these guys https://www.arc-uk.org

Just ring the helpline and cry down the phone. I think sometimes speaking to someone who mildly understands helps. The stress and pressure this situation puts on you is crazy. They support people in TFMR and continuing pregnancies. There’s no pressure just lots of guidance and support.

i am pregnant again after some quite horrible experiences and I still feel jealous of pregnant people. That they seem to have it easy that they don’t have PTSD from pregnancy. The biggest thing is I miss the person I use to be.

I have cried at every appointment and get worked up beforehand. I haven’t worked out how to manage any emotions yet. Just know you aren’t alone in your thoughts / feelings

Not quite the same but they found bilateral talipes at my 20 week scan. I had gone alone and it was horrible.. They refused to let me drive him until I had taken time to take it in and have a cup of tea. Took 4 years of intensive treatment.. But never considered termination..
Ds leads a full life after that difficult start.. You would never know how his early years had been.
Sounds like your baby is well wanted..
And well loved already.

V hard when you have news different to those around you.
Remember will still be your baby .

Can you chat to charity eg LimbBo Foundation share.google/a4JYlZgX2xgqGvTIw

Thank you all so much for taking the time to reply. It’s really helpful to hear kind words and your experiences of support

Thank you for sharing, I will definitely call next week. I resonate a lot with what you’ve said! The start of this pregnancy was marred by my previous losses so the further bad news has felt like a nightmare. Wishing you all the luck with your pregnancy, I hope it gets easier

I am so sorry to hear your news. I really empathise and understand your feelings first hand. We had a late diagnosis of chromossomal abnormalities last year, as a result of our 20 week scan and it felt like the ground had swallowed me whole and nearly fainted a few times. Please ring arc as someone suggested. Good luck and please take care

I wonder if there is a push for mental health support that could be provided sooner? I had a panic attack in a bad news appointment around 12 weeks (though unbelievably I still have the pregnancy at 29weeks so things have changed) but they immediately referred me to a psychologist and I’ve been able to choose how regularly I need the appointments since.

I know what you mean about going to ordinary pregnancy groups when you have this huge cloud of strain and worry over you. Even in support groups for my specific issue, not many struggled to conceive for so long, so the stakes feel very different, as they are able to talk about trying again.

But you do find women who know exactly where you’re coming from, and that to me is like drinking water when you’re very thirsty.

you’re in such a worrying time having gone through such a hard time to get there. Having to deal with compounding issues make it feel unbelievable and I so understand your complicated feelings about other pregnant women. I hope very much that this remains an isolated issue, and that your nhs board get you the support you need soon.

I have found some charities which have forums for parents of children with similar limb differences. The hospital have also said they’ll connect us with parents of children who have had similar treatment which I think will be amazing when he’s born. Fingers crossed the therapy referral comes through soon. Best of luck with your pregnancy and thank you for the kind words

I had a similar anomaly scan where I found out my baby had problems with her renal system and would require surgeries and other treatment. It was awful coming out (on my own) in floods of tears while others were elated. I also had some friends and family having girls within weeks of me. There was a question about my baby having chromosomal abnormalities too which made me simultaneously wish my pregnancy away yet also really scared of giving birth (because of the uncertainty), but they checked everything so thoroughly during my scans. She is now almost one and absolutely wonderful. Nothing else was diagnosed and we often forget about her health. I wish I could go back to my pregnancy, with the knowledge that everything is going to turn out so much better than I imagined, and enjoy moments of it. Definitely call ARC and don’t be afraid of asking too many questions at your scans and appointments. Sending you a huge hug.

edied for typo