Unfortunately I have some bad news today....
I had my 12 weeks scan yesterday and it looks like my small twin has a defect called Omphalocele basically means it's bowels are on the outside of his body! This alone means the baby will have to have a operation to have the Bowels put back inside as soon as baby is born , it's quite serious I've been told but that's not the worst bit ... The worst bit is because baby has this defect there's 80% chance of baby having other defect like Down's syndrome , Edwards disease , Heart problems and other chromosome abnormalities! So as it stands at the moment I don't no if my baby will survive when born for a week months or years it all depends what other problems baby has , if she gets the Edwards disease she will only live weeks! We do have options of aborting the baby or having other invasive tests to no exactly what else baby has wrong but this comes with high risks and I could end up losing both my babies so to me none of those is an option ! I've just got to wait it out and pray I'm that 20% that baby just has the bowel defect ( which is bad enough but survival rate is high compared to having more defects on top )
My next step is I've been transferred to a specialist hospital an hour away that specialises is this and I will be having a scan and other tests on to tell me how bad the Bowels are out and if they can see any other defects at the moment. I will also have to give birth at this hospital too as I will have a specialist team around me to take baby away to operate after birth which I'm upset about ... My appointment is Monday so atleast I haven't got to wait too long to find out , devastated right now is an understatement! I can't stop crying all the time! To top it off the small twin aswell is small so there worried about growth too so I'm also under more specialists at my hospital , I have appointments every week and scans nearly every two weeks at the moment to keep a close eye on baby and if no better it will carry on most of pregnancy! I just want to have a normal pregnancy
We've been through so much to get here and now this...what did I ever do to deserve this! Please excuse me if I'm distant for a while it's took me a while to pick up the courage to right this down for you ladies.
I just want to lock myself away until Monday...
My question is has anyone had any experience with this defect called Omphalocele ? Where the Bowels are on the outside of your baby ? Any info would be gratefully received xxxx
I had my 12 weeks scan yesterday and it looks like my small twin has a defect called Omphalocele basically means it's bowels are on the outside of his body! This alone means the baby will have to have a operation to have the Bowels put back inside as soon as baby is born , it's quite serious I've been told but that's not the worst bit ... The worst bit is because baby has this defect there's 80% chance of baby having other defect like Down's syndrome , Edwards disease , Heart problems and other chromosome abnormalities! So as it stands at the moment I don't no if my baby will survive when born for a week months or years it all depends what other problems baby has , if she gets the Edwards disease she will only live weeks! We do have options of aborting the baby or having other invasive tests to no exactly what else baby has wrong but this comes with high risks and I could end up losing both my babies so to me none of those is an option ! I've just got to wait it out and pray I'm that 20% that baby just has the bowel defect ( which is bad enough but survival rate is high compared to having more defects on top )
My next step is I've been transferred to a specialist hospital an hour away that specialises is this and I will be having a scan and other tests on to tell me how bad the Bowels are out and if they can see any other defects at the moment. I will also have to give birth at this hospital too as I will have a specialist team around me to take baby away to operate after birth which I'm upset about ... My appointment is Monday so atleast I haven't got to wait too long to find out , devastated right now is an understatement! I can't stop crying all the time! To top it off the small twin aswell is small so there worried about growth too so I'm also under more specialists at my hospital , I have appointments every week and scans nearly every two weeks at the moment to keep a close eye on baby and if no better it will carry on most of pregnancy! I just want to have a normal pregnancy
We've been through so much to get here and now this...what did I ever do to deserve this! Please excuse me if I'm distant for a while it's took me a while to pick up the courage to right this down for you ladies.
I just want to lock myself away until Monday...
My question is has anyone had any experience with this defect called Omphalocele ? Where the Bowels are on the outside of your baby ? Any info would be gratefully received xxxx
