Ada's Story: Agenesis of the Corpus Callosum

Finding out during pregnancy that Ada was diagnosed with CACC- Complete Agenesis of the Corpus Callosum.

[@cjmurphy8079]

My grandson was born with ACC. He is the JOY of my life. He's smart, he just doesn't learn like other children. He' super funny and he loves to cuddle. His memory is AMAZING and it alone will take him far. He's delayed developmentally, but is making progress. He was also diagnosed with cerebral palsy and we believe he's on the autism spectrum somewhere, but we are having problems determining that exactly. He is 8 years old now and I can't imagine life without him. He is a blessing to our family. Stay strong!! You are your daughter's advocate through life's journey. She will be fine because she has you!

[@lindsaystafford8149]

Hi CJ, Thank you for sharing with me! These children are amazing!

[@gleejewell1013]

My nephew has ACC . He’s over 40 now. My sister wrote the book “ACC and Me”. It’s a children's book to help all ages understand ACC. All the best .

[@lindsaystafford8149]

Thank you so much! I’ll have to look for it.

[@gleejewell1013]

kzbin.info/www/bejne/Z6uohWOOmsh0p7s If this works… it’s a lady with ACC reading the book👍🏼

[@miryasinjafiry2792]

Will u send me the pdf of this book

[@LyndaAitabbi]

❤

[@ofb2126]

Thank you for posting your story. My brother was born with apparently born with CACC; however, it was not until his late twenties that he was formally diagnosed. During his younger life, doctors thought he just had a learning disability. Fast forward, he was in a car accident which allowed for several scans to be done on his head, and that is when doctors were amazed to discover his condition of the CACC. A living miracle.

[@lindsaystafford8149]

That’s an amazing story. Thank you for sharing and reaching out!

[@talitjiang]

I recently found out I have this condition. I am 29 and was diagnosed this year when I was at emerge for something entirely different. I was told its uncommon to be diagnosed as an adult, the neurologist said I managed to have a pretty full amazing life despite missing a part of my brain. I at least am on the mild end of the spectrum of this condition, so it doesn't really affect my daily life, though now I understand why some simple tasks are incredibly difficult to me. I am glad there's video accounts of people who have this.

[@lindsaystafford8149]

Hi Tali That’s so interesting, I would love to connect with you at some point.

[@alejandrazepeda4796]

Yes this is completely true “exceedingly rare” was the words doctors used when describing my daughter’s diagnosis with ACC Colpocephaly, we found out very recently, move in weekend at her university 2 months ago to be exact. My daughter and I reside in the LA area of California, Doctors seem astonished at her abilities to make it to adulthood without pediatricians knowing or under close care. They were surprised to hear she had been accepted by a University. truly remarkable how the human brain can create a pathway for itself.

[@marycoleman6963]

I’m 58 years old and found out in my 20’s that I had this. The neurologist was shocked. There wasn’t a name for it then. I’ve led a pretty normal life.

[@lindsaystafford8149]

Wow! That’s amazing. Drs almost put the fear of god in you, and suggest termination! Thank you for reaching out! If you ever want to chat you can find me on instagram @lindsay.farrell.ann

[@samanthasepe2729]

Same here! In my 30s, and lived my whole live without ever knowing! Brains are CRAZY right!?

[@TinTinCar]

Hi Lindsay, my grand daughter was born 7/24/2020 with CACC. You are a shining light and give such hope to our outlook. I'm just watching your 1st video and will continue to follow with updates of my own. God Bless You My Friend.

[@lindsaystafford8149]

TinTinCar thank you so much! I hope I can help! And I’m here if you have any questions!

[@ferkinderkin3165]

My brother’s unborn baby has just been diagnosed with this. I’m watching these videos trying to gain the strength to know what to say to him when I call him. Thanks for these.

[@lindsaystafford8149]

I know how scary it is, and if they ever have questions, you can find me on Instagram @lindsay.farrell.ann All you can do is be supportive, don’t say everything will be all right, that’s not what they need to hear. They need to hear that you will be there for them, and the baby, no matter what.

[@ohthjoysofparenthood]

I totally feel you with the anxiousness and confusion over the terminology! I found out my daughter was missing the corpus callosum when I was 36 weeks pregnant, she's going to be 4 years old next week and she is an absolute treasure. She has mild autistic-like behaviours but otherwise she's completely "normal". X

[@lindsaystafford8149]

Hi Simone, thank you so much for watching. It’s so scary when you are bombarded with information. Where are you located? I would love to connect and pick your brain!

[@ohthjoysofparenthood]

@@lindsaystafford8149 south coast of England. I think I've found you on Instagram, we can chat on there if you like?

[@lindsaystafford8149]

@@ohthjoysofparenthood yes I would love that!

[@kholaaagain]

@@lindsaystafford8149 I would like your IG handle. I'm in n.y and I'd like to know someone in the states to follow and learn from. My name on there is @allthingskholaa

[@lindsaystafford8149]

@@kholaaagain I tried to find you but nothing came up In the search

[@nonametryagain9588]

I'm 29 living in Belleville and have acc. I've always struggled intellectually.but never knew why,until years later.as I get older I do find the easiest tasks can be the toughest to accomplish

[@lindsaystafford8149]

I would love to connect with you via Instagram if that’s ok. @lindsay.farrell.ann

[@shelleydecleene6085]

I appreciate that you did this. We also found out at our regular anatomy scan to get a second opinion at MFM. After that, we have been advocating to see neurologists at Childrens' for a 32 week fetal MRI. While the MFM doctor doesn't believe he sees the corpus collusm, we want to get more information from the specialists at children's. I truly am trying to keep all of my emotions in check but appreciate you sharing. We don't know what is in store...

[@lindsaystafford8149]

Hi Shelley If you would like to chat more you can find my Instagram @lindsay.farrell.ann

[@danielleohare3364]

My Daughter has Acc - She is 12, she was 33weeks. Acc- found at Birth. She has alot of Challenges. Mental Health, Autism Spectrum, Adhd, Learning Challenges. She struggles to write. Boces School. I still don't know much more. Be Strong , Mama. It's not your Fault. Keep Sharing your/ her story.

[@lindsaystafford8149]

Thank you so much for sharing yours!

[@ashleesalinas3024]

Thank you so much for your videos im 33 weeks my daughter had ventriculomegaly on each side and with the MRI they told me she has partial agenesis of the corpus callosum i still dont understand what that means i have yet to speak with the Drs. But your videos give me hope and faith, everything else is completely healthy about my baby so im praying everything goes well 🙏

[@lindsaystafford8149]

Hi Ashlee.. it’s so scary, and the drs know nothing! Where are you located? I’m also on Instagram @lindsay.farrell.ann... I post a lot about Ada there

[@chelsearoot4853]

I know this is years old, but would it be too much to ask for an update? My story sounds exactly like yours did, & I know that each story is different in some ways… but I’m just really looking for some positive outcomes during this difficult time.

[@kaitlinjohnsen3236]

Hi Lindsay you are so strong and Ada chose you to be her mama because of your strength and courage and your loving heart. Thank you for making this KZbin channel. I will be following you and your daughter on your journey together. I did not get any ultrasounds during my pregnancy so I’m still processing and honestly not able to talk about it yet. I gave birth to my daughter 10 days ago. I feel hopeful and positive about her future and finding you and others going through the same thing is truly helpful.

[@lindsaystafford8149]

When you are ready to talk about it I’m hear to listen. You can also find me on Instagram @lindsay.farrell.ann

[@RosieSerrano-bk8ih]

Thank you so much for sharing this it is giving me some hope, i too exactly like you experienced exactly what u did during an anatomy ultrasound im 22 weeks and 4 days and was asked to come back in for a second ultrasound only to get this news and have been crying all day , mri is on tuesday so praying for the best , thank you

[@lindsaystafford8149]

Hi Rosie, it can be so scary. Thank you for sharing. If you want to connect with me, I’m easy to find on instagram @lindsay.Farrell.ann

[@antoniojsanchez9194]

Thank you for your story 🙏 ❤️

[@jodymarie7543]

My daughter was born missing her acc she was also born with craniosynostosis and an inverted kidney. It's extremely scary finding out your child has all these medical problems thank you for your story

[@jessegland3000]

Thank you Lindsey for sharing your story. I was born 1977 the technology was not there. In the year 2000 I had a black out episode and was rushed to the hospital. They did the scans than and that when we found out I also was born with CACC. I have been looking for groups of the same. I have been doing research for the past 22 years. Now at the age of 45 things are starting to happen where I have to alter my ways of living.

[@lindsaystafford8149]

Hi Jesse Thank you so much for reaching out. It’s crazy how much things have changed. I’m happy you were able to get some answers!

[@imogengardner194]

Hi Jesse, can you tell me a little about the research findings you have ? I am on the verge of telling my ten year old son Sam about his condition and so frightened I will get it wrong ;( thanks , Imogen

[@aracelyslife8267]

I have a 6 year old daughter with agenesis of the corpus callosum and she doesn't talk, move, walk,stand :( it's so heartbreaking and I wish she would have the normal childhood like any other kid her age

[@lindsaystafford8149]

If you ever need to talk, I'm here to listen

[@mimilove_]

My son is exactly the same. They’re Angels sent from God!❤️

[@lindsaystafford8149]

@@mimilove_ they really are

[@mimilove_]

Ladies please know that if you have one of these beautiful Angels, your not cursed and there’s no need to be ashamed. God gave us these beautiful babies because he knew we had the hearts to give them the love and care that they so desperately need and he knew he could trust us. So please have peace, release any of the worries and frustration you may carry, and allow yourself to be happy. Your blessed more than you will ever know!!❤️❤️

[@bitanji6851]

My 11 old son has ACC,he was born 24 week gestation. He is 5th grade now,but school has been so challenging for him,he also has no peripheral vision.he is in the IEP program in school.i don't know how his future will be,but just praying for miracle.

[@francawilliam2856]

Thanks for giving me the hope to keep my baby, my baby is also diagnosed of ACC!

[@lindsaystafford8149]

hi @francawilliam2856 i'm so happy to hear that your baby is healthy! send me a message on instagram @lindsay.farrell.ann and we can chat

[@ttlola5515]

Im 53 and I found out by accident in my early 40's. I was having severe headaches and my neurologist did a bunch of test and he was also shock that I didn't have trouble years into my childhood,the only thing I had was really bad headaches and insomnia all my life. But they need to

[@imogengardner194]

yup ( from Scotland ) I was advised to terminate throughout the pregnancy. Sam is now ten ;) and whilst there are problems that are arising he is so smart, physically perfect and has such a joy of life, thank yo for your video, even now, and Sam is fine, it touched me and brought back all those feelins when I was told Sams brain didn't completely form. I hope others in this situation see this.

[@lindsaystafford8149]

Can I ask what problems are arising?

[@imogengardner194]

@@lindsaystafford8149 Hi Lindsay. Well some problems with learning as he progresses through primary school.. he has one year left until he transitions to high school. Difficulties with abstract thinking .. maths, time etc But recently he has begun to dislike social interactions when there are lots of people are involved. He is fine one to one, but as the numbers increase so does his desire not to get involved. He goes to a support group here in scotland called young carers, this has helped him, they do lots of social activities and outings. He started going to this because I have my own fairly significant mental health problems, and am also autistic so find socialising problematic. But recently, he is ten now as I have mentioned, he has become more anxious about socialising. I am on the verge of explaining to him his condition because he does not yet know (although his school does ) because I feel that he has a right to understand some of his struggles better. But this is a new step .. and a scary one for me, very frightened I will get it wrong, but am asking for help. I hope this helps a bit, please feel free to ask anything, Sam has other difficulties too but don't know how relevant these would be to you as they are of a more private nature. best wishes, Imogen

[@lindsaystafford8149]

@@imogengardner194 would you like to chat via instagram? My name is @lindsay.farrell.ann

[@imogengardner194]

@@lindsaystafford8149 great, sorry I have just seen this ;0 my son Sam is off school today due to industrial action (the other older one at school till 5 0 but I will try to send a message asap .. just tried and my phone decided to have a heart attack and die .. but temporary I hope!;0 lol ;)

[@lindsaystafford8149]

Please like and share to spread awareness!

[@LifewiththeNazarios]

Thank you for sharing your story about Ada🤍 We had a similar experience & brought back so many emotions. We also had a few doctors talk about termination while we were far along int he pregnancy. I recently had my daughter she’s almost 4 months old now & she has CACC. We found out during the 20 week scan & also did further testing & a fetal MRI. Thank you again 🤍🤍

[@lindsaystafford8149]

Thank you for reaching out Stephanie! If you want, you can find me on Instagram and we can chat! @lindsay.farrell.ann

[@Aleshiafontaine32]

Hi I'm so happy to see your video it's hard to find anyone that discuss this condition my daughter is going on 19 months and every day I'm reading about her condition just to get a good understanding, right now she's not walking she's standing and crawling and she only says a couple words.

[@lindsaystafford8149]

Hi! Thank you for commenting! I'll be making a video update soon on Ada as she is almost 15 months! I'm happy to help in any way! That's the whole reason why I made the video, because there is barely ANYTHING out there for us!

[@falkalthami782]

You are a strong and a brave mother ,, I’ve just had a grand sun with the same diagnoses , but with physical issues, but thanks for God for everything, we Muslims believe that God tests us in this life, when he find you patient, he will reward you, in this life or in the hereafter.

[@lindsaystafford8149]

That’s beautiful! Congratulations on your grandson!

[@freebadinfluence6948]

I have ACC and plus many other development issues and I'm 20 and independent

[@lindsaystafford8149]

That’s amazing! Do you have Instagram? I would love to connect!

[@freebadinfluence6948]

@@lindsaystafford8149 jaminsoncampbell is my Instagram

[@jennytaveras9346]

Is ACC and csp the same thing?

[@zoerad]

Thank you so so much for sharing. We just had a similar experience with a quite flippant 20 week scan, referred for a second scan which freaked us out big time and now waiting for an mri. Did Ada also have any ventriculomegaly at all? Sending love and thanks from the U.K. xx

[@lindsaystafford8149]

She does have it yes. If you have ACC you will also have ventriculomegaly. You can find my on Instagram if you want to chat @lindsay.farrell.ann

[@sabrinaagostino4633]

This is how we found out our baby girl (first baby - at 36 weeks) has it. Ventriculomegaly was shown in all the ultrasounds, then they did an MRI to confirm, just got the confirmation today.

[@IsaiahDiaz11]

My daughter is 8 and her ACC symptoms seem to get worse. Specifically with emotional and violent outburrs! Bedtime is the WORSR 😢 😭

[@lindsaystafford8149]

Really? This is interesting to me. As Ada gets older, I definitely notice areas she struggles and areas she doesn’t.

[@andrewl1884]

I have total Agenesis of the corpus callosum and i didn't even know until I got checked for an unrelated issue.

[@lindsaystafford8149]

Oh wow! How old were you when you found out?

[@andrewl1884]

@@lindsaystafford8149 33 years old. The doctor was definitely inappropriately excited about it 😆

[@lindsaystafford8149]

@@andrewl1884 excited? Why were they excited?

[@andrewl1884]

@@lindsaystafford8149 he hadn't seen an adult unaware of it find out that late in life. Especially with it being entirely absent.

[@sarahsavery9219]

Hi Lindsay my name is Sarah am from Vermont USA my daughter was born 6/8/2021 my pregnancy with her was normal or so I thought it was normal I ended up going to a high risk Obgyn when I was 23 weeks pregnant with her since my doctor found a spot in her brain that was blurry I went though a fetal MRI also and that when I found out that she had ACC she just had an MRI and I found out that it’s CACC with her only being 3 months now you give me hope that everything is going to be ok since it’s just the CACC

[@lindsaystafford8149]

Hi Sarah Thank you so much for reaching out. I know how scary it is, but I hope you find some comfort in knowing that your daughter will be ok. I have other videos and you can find me on Instagram @lindsay.farrell.ann , I post a lot about Ada there as well! Reach out anytime!

[@homeschoolresourceswithnad186]

My son is 12 now. He has p-acc and I can tell you it will be ok. We just decided to homeschool him. Follow follow us if you would like information on his progress. I’m just subscribed.

[@zulfiyequliyeva1938]

İntaqram varmı sizin ?

[@patriciawilliams593]

Godbless

[@natashabailey5988]

Im 19 wks and i just found out my daughter is missing a CSP(Cavum Septus Pellucidum) ❤️ im scared, im unsure, idk whats going to happen….if anybody has been through this or have any advice for me please ….😔❤️😭

[@elahaniazi8627]

My daughter is 3 years old she has corpus callosum (acc) still she can’t sit, walk and talk😔

[@lindsaystafford8149]

Hi Elaha, I’m sorry to hear that. Every journey is so vastly different. If you ever want to chat you can find me on instagram @lindsay.farrell.ann

[@Al556]

I wonder if fertility drugs have something to do with it? My ex was taking them as well, became pregnant and our daughter was born with complete ACC along with gray matter heterotopius and schizencephaly.

[@lindsaystafford8149]

Hi Alex From what I have researched there is no definitive answer. This is something we will never know unfortunately.

[@ashleethomas2368]

Hi everyone im 22 weeks and my baby is possibly diagnosed with ACC I have to go to a MRI to confirm this. But I'm wondering what yhe percentage of a child with this condition to lead a normal life? I know its broad but I feel like my doctor left me in the air on a lot of things

[@morganroberts271]

I’m currently 27 weeks pregnant and my son has been diagnosed with ACC through MRI and scan abnormalities. I have no idea what I’m doing, I don’t know what it’s going to mean for my son in his life. I’ve had amniocentesis and they are all normal so it’s nothing genetic, I had the infections test and that was normal. I’m so confused on what it could be! I don’t know why this has happened with all the results coming back normal. I live in the UK and they are deciding if we’re eligible for an abortion, i don’t have a clue what to do….. now waiting for a brain specialist to look over the results, will they be able to determine if it’s mild or severe from that?? Just need a bit of guidance💔

[@lindsaystafford8149]

Hi Morgan come find me on Instagram @lindsay.farrell.ann I would love to chat with you

[@lindsaystafford8149]

I’m available all the time to talk. I will give you as much guidance as I can!

[@sarahsavery9219]

I would love to chat with you I have a daughter who got diagnosed with ACC when I was pregnant with her

[@lindsaystafford8149]

Hi Sarah I would love to chat. You can find me on Instagram @lindsay.farrell.ann

[@missmai3037]

My son also has ACC he's 3 years old he hasn't spoken or walked yet

[@lindsaystafford8149]

Hi Mai, if you ever want to chat you can find me on Instagram, lindsay.farrell.ann

[@alexist7645]

I’m pregnant and they told us our son has this plus hydrocephalus and something called polymicrogyria. I’m so depressed and feel so guilty. I don’t really know how we are gonna do thing because thing seem so intense.

[@lindsaystafford8149]

Hi Alexis, I'm sorry that you are going through this. It's never easy. How far along are you? One thing that everyone told me.. though it seems irrelevant until it happens, once he is born, all you will feel is love. If you ever need to talk to someone, I'm here.

[@alexist7645]

@@lindsaystafford8149 he was born two days ago 🥰 love him so much and the doctors got everything so wrong 💗💗💗

[@lindsaystafford8149]

@@alexist7645 congratulations! Please find me on Instagram @lindsay.farrell.ann. I would love to connect!

[@miss.seattle2055]

Hi Alexis currently going through the same situation. Is there a way to reach you to talk about this?

[@ashleethomas2368]

And thank you for making this video.... Not a lot on this..... Google just makes it worse

[@lindsaystafford8149]

It definitely does. If you ever want to chat I’m open to that

[@ashleethomas2368]

@@lindsaystafford8149 thank you. I'm wondering what percentage of kids go on to lead normal lives but google just always throws the worst at you... I want to still enjoy my pregnancy and prepare for what I can

[@hmckinnon1974]

How can ACC affect the bowel?

[@lindsaystafford8149]

Hi Heather... I’m unsure as to how it can affect the bowel. I’m not a dr, but I was told that it can affect areas down the midline of the body.

[@cooperfreckles]

Maybe it effects the autonomic nervous system? I do not know but was wondering because I have disautonomia and it totally effects my bowels plus a lot more functions in my body.

[@Revelie]

I have the complete agenesis of the corpus callosum and it sucks to have in my experience

[@lindsaystafford8149]

Would you be open to talking through Instagram or Facebook? I have some questions.

[@jennytaveras9346]

I also just found out my baby has ACC and I was devastated but when I did the MRI they didn't find any abnormalities or anything else so for now I'm holding on to god..every human is different theres people with a complete brain and have more issues than a person with ACC no one is perfect but god is the only one that can help so everyone going through something like this just pray and hold on to him and manifest the best🙏🏻❤️

[@desireetucson7877]

I am 38 and found out I have complete a genesis of the corpus collosum

[@lindsaystafford8149]

Hi Desiree. Thank you for reaching out! I’m curious, have you had any difficulties that could be related to ACC?

[@desireetucson7877]

@@lindsaystafford8149 learning to ride a bike was difficult. Tying my shoes

[@ladykatherine2939]

I can barely hear you.

[@lindsaystafford8149]

You can’t hear the video? Is your volume turned up all the way? I haven’t had complaints about the sound before.