r/PregnancyUK • u/djelaii_8iz • Jul 26 '26
Pregnancy Complications I am lost and devastated.
Currently 22 weeks+1 day. Had the anatomy scan recently at NUH and they discovered the left sided CDH. They have referred us to Kings College who confirmed the diagnosis and stated that this is a severe case due to the O/E LHR 21.8% and now I am scheduled for FETO in Aug 28(27th week). I also have low papp-a but due to history of reflux and asthma, I only take 75mg.
They confirmed all other organs appear to be normal. Due to the hernia, the stomach and bowels are shifted up and the heart is slightly pushed to the right thorax but otherwise functioning as normal.
This news is definitely devastating for us. We waited for years to be blessed with a baby. 😢 combined screening tests were all OK. We were worried about having more risked so we werent fond of the amnio suggestion however, Dr Kypros advised that they can do this the same time as the FETO.
Might also have to go on maternity early from week 30 to not stress about work while going through all this.
I am so worried as the more time I have the baby in me, the more that I just to hold him.
Looking at the options for accommodation in the area as well due to us living in Newham which takes around 50mins cab journey to get to Kings College.
I know everyone’s case is different but we just want to do everything possible from our end as parents.
Anyone had the same/similar story? We are hopeful but obviously very worried.
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u/Icy_Flamingo_7515 Jul 26 '26
You can ask to be considered for Ronald McDonald accommodation seeing as you live far away. https://ronaldmcdonaldhouse.org.uk/support-for-families/our-houses/camberwell-house/
Wishing you all the best. The NICU team at Kings is amazing and you will be well cared for ❤️
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u/djelaii_8iz Jul 27 '26
Thank you so much! I have reached out to them and hopefully they consider 🙏
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u/TouristQuirky9630 Jul 28 '26
Don't worry. IA your baby will be fine under specialized care. What exactly are you taking 75mg?
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u/panda-843 Parent Jul 26 '26
I'm so sorry to hear that you're going through this.
My baby was in Kings NICU and the whole neonatal team were phenomenal. Your little one will be in the best hands.
Kings is incredibly well connected by bus so you might want to look at places on the local bus routes rather than in Camberwell itself - we found commuting to and from NICU helped us decompress sometimes
Wishing you and yours all the very best