Intro to my ACC baby and me

Isolated Agenesis of the Corpus Callosum : finding out my baby has ACC at 23 weeks pregnant

[@jemimaoo]

Hi I love your sharing your journey. My baby was also diagnosed with this. At my 20week scan they found it hard to see the Corpus Callosum so I had to go back 2 weeks later for a rescan and was told that it was missing. I was brought back again at 28 weeks pregnant for MRI scan on my baby thats when it was final my baby had a missing Corpus Callosum I was offered ammo test at 20 weeks and again at 28 weeks which I rejected due to the fear of early labour or worst as they advised me. There was no other issues with in the brain or body which I was told was a good sign, fastward to my babys birth they took him away at 2days old for a scan on the brain then sent for a another MRI scan at 6weeks which showed that part of the Corpus Callosum had formed. Now my baby is now 3months and is a perfect healthy baby and doing everything a baby should be doing at this age, tho we have been told there is still a chance my baby may have learning difficulties or slow at hitting milestones. But at the moment everything is fine. I was also offered to terminate my pregnancy at 22weeks and again at 25weeks as they feared the worst possible case but I kept reassuring myself my baby would be fine as everything else was perfect and I'm glad I stuck to my gut feeling now I have perfect healthy baby.

[@amberhart1268]

Jemma O'Hara so happy to hear of this happy outcome. The Drs still hv much to learn about ACC

[@notatallimsorry2356]

Thank u so much, ur experience is amazing! Now I pregnant a baby 26weeks, it has ACC , I wish God helps it to learn all the skills that the baby needs. Hallelujah

[@liveloveblog8274]

great happy for u

[@Ghyatt17]

Thank you !

[@angimayraful]

Yes, I'm one of those mammas. Thank you for this, it does give hope❤️

[@liveloveblog8274]

its so hard im waching her and wondering how gona be .

[@elahaniazi8627]

Hello my baby has the same problem now she is 2 years but still ahe can not sit and walk

[@zakriafarouk8524]

Hi my child is also suffering with this problem is there any medicament pls help me

[@toyanmi03]

Do you have a email where I can contact you my son is 1 years old he have ( hypoplasia of the corpus callosum )..

[@shahbazbagdadi4642]

Is there any supportive medication for ACC

[@amberhart1268]

nothing that i am aware of unfort. While they say life long seizures are potential side effect for acc babies bc of the extra fluid they will always hv in their brain Vs average brain… the likelihood lowers after age 5 if they get to that age with ought one. Because of that info, me and her Neurologist decided that vackzeens were not for her. S h ots heighten the possibility for beg the seizures. Many should look into more information and weigh the pros and cons for them and their family.

[@shahbazbagdadi4642]

@@amberhart1268 thanks alot for quickest reply.

[@reg24babymonster]

hi amber.. i just did my anatomy scan last 11 of may.. i got the result after 3 days.. the doctor told that my baby is missing corpus calussom.. i got devastated after hearing the news i keep on crying.. tomorrow i will meet the specialist and do the retest and hoping they will see the missing part.. 😢 .. and they will tell me ebrything will be alright..

[@amberhart1268]

Regina Flores I know exactly what youre going thru and sending you hugs... this is the darkest hour of your pregnancy... I for one never thought I could laugh again.... What week are you in?.. have they offered an amnio to make sure no syndromes are involved?

[@KG-kk3ef]

This just happened to me also! I had two weeks of thinking my baby had this part missing in her brain. I had a second scan done which showed everything was fine. I prayed so hard to god about it! But I decided even if she has this condition I was going to accept it no matter what. Intelligence comes in all different forms. 💓