i had twin boys on 30 jan 07 , at my twenty week scan i was told both my babies would probably die, twin 2 had a diaphragmntaic hernia and suspected downs or edwards but then they couldnt tell if they was identical or not it turned out my placenta was fused so if one died inside me both would i ended up havinf tttts and had an emergency c section nathan was resuscitated and lived 27 hours :-( i was wondering if anyone elses life has been destrpyed because of this birth defect . its heart breaking as they dont know why it happens and it affect 1 in approx 2500 babies xx
RE: Diaphragmatic hernia
Hi Hayley...my cousin got pregnant and at her 20 week scan they told her that her little girl had Diaphramatic hernia...they kept an eye on her and told her that as soon as she was born she would be operated on...she lived for 10 days...5 months later she was pregnant again with a little boy and the doctors told her at 28 weeks that he had the same but not as bad as her little girl ...anyway they kept an eye on her until he was born ...sadly he was worse than her little girl (Megan Rose) and little (Chay) died 2 days later.. my cousins and her boyfriend had tests because they were convinced it was something to do with her Genes...which it wasn't and they have told her she could go on to have a healthy baby...my cousin is in bits and doesn't understand whats gone wrong but is to scared to try for another baby as she says she couldn't go through with burying another baby God bless x
RE: Diaphragmatic hernia
Hi Hayley, my son Adam died 25 years ago today from a diaphramatic hernia, we did not find out until he was born that he had this condition, he lived for four hours, we had to turn off the machine keeping him alive.
I already had one daughter before Adam and I have since had three more daughters, none of my other children have had this condition, I was told by my doctor that it was a "fluke of nature"
I really feel for you, take care.
Amanda xx
RE: Diaphragmatic hernia
hayley please feel free to read phoebes story, we too are trying to come to terms with losing our beautiful baby to diaphragmatic hernia.
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RE: Diaphragmatic hernia
Hi, I also lost my little boy Kadyn on 28th April this year to a diaphragmatic hernia, he was 1 day 1 hour and 17 minutes old. He was diagnosed with it at the 20 week scan and was given a 60% chance but when he was born he wasnt strong enough. I'm still coming to tems with it but it would be nice to speak to others who know what i'm going through xxxx
RE: Diaphragmatic hernia
Hi like u all I recently lost my daughter to CDH
Hers was right sided, liver blocking the hole and growth of the right liver.
I was not diagnosed till 31 weeks so was given a 70% chance that she would be ok. At 1 day old she was transferred to another hospital for ECMO, she had the op to fix her hernia at 10 days old, she came off ECMO on the 1.1.12, after being told that this would be the last attept as she failed to come of twice before, however jaimee-Rose died the next day even after having such a great night.
We were thankful for the fantastic 18 days even thou we didn't get to hold her till the day she died, we only see her open her eyes twice.
I'm struggling to come to terms with why, she was being so strong and fought so hard. They have now finally let us have our funeral, because they have opened an inquest into her death as they now are not certain that it was just the cdh that took her from us, but medical intervention they may have worsened things.
I feel guilty because I consented for her to have all these things done that the docters persuaded me she needed and now all I can think is 'was it our fualt, should we have said no?'
I miss my girl so much and I just want answers but they said it could be months till we get these. I just need to know. Xxxx
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