Agenesis of the Corpus Callosum: Layla is crawling

Layla learns to crawl while missing part of her brain

[@thatderangedbunny]

You explain things so well and you’re such a patient mom🥰Beautiful, lucky little girl may she continue to prosper 🙏

[@gesa1139]

You have a wonderful, funny, smart baby. I know it´s hard, but try not to pay so much attention to the "milestones" - she will like every human being develope in her own way, and it will be joy to live with her. Greetings from a Mama from Germany. (Son is a very special, smart and loving child with ACC)

[@kary1991ka]

I'm 19 weeks pregnant, Doctor just tell me my baby has Acc I was really sad and I cry all day yesterday... I'm feel much better to watch your video and you have a precious girl!

[@amberhart1268]

Kary Carpio I absolutely feel your pain. I hope all my videos are helpful. I was very depressed for a long time, even after she was born. But eventually the clouds lifted and I began to see more sunny days. Hugs to you and baby.

[@rupaayapilla2824]

I'm 20 weeks pregnant and our baby was diagonised with ACC. We are devastated with that news. Doctor has even given pregnancy termination as an option. We have MRI scan next week. It is very comforting to see Amber's little girl. How is your baby doing now Kary? Please let me know.

[@kary1991ka]

@@rupaayapilla2824 what your heart say? My always tell me my baby was ok I have a beautiful 7 months baby boy he's perfect he's normal! The CCA don't affected him in nothing right now if you has Facebook looking for me Kary Carpio I can help you with any question I perfect understand you❤

[@myluxury1st]

Hi! How's everything going with your baby? My son is almost 3 and might be around the same age as your daughter? He hasn't hit any milestones. I'm curious to know what has happened with you and your baby. Thank you.

[@myluxury1st]

@@rupaayapilla2824 Hi. What ended up happening? Did you end up having your baby? I'm curious to know what happened? None of this was detected at my pregnancy and baby came out fine but then at 2 months old; everything went wrong.

[@alexislife.alexislife.]

My daughter Olivia is 4 years old she was born with the agenesis of the corpus callosum she is doing amazing and getting ready for school this September. It was a long journey to get here lots of appointments and therapy.

[@summayasylvia4640]

Can you plz contact with me I m from Pakistan my daughter is two years old she is also have thin carpy collosum she is delayed in her milestones I need suggests plz guide regards

[@SuccesswithSAGARSAXENA]

Hello sir can you tell me about the medication and other details

[@joanned8090]

Thank u for responding so quickly! My daughter was diagnosed with ACC in utero a week before I gave birth, 24 years ago. Technology has certainly changed since that time! Luckily, she has not had seizures or other major medical issues. She has always struggled socially..... It breaks my heart... she has such a loving heart, but can’t form meaningful friendships.,,, she has graduated college but still searching for a full time job with health insurance....

[@nazmulnahid2707]

Happy to see her crawling, best of luck for her👌 want more video about her prognosis.

[@Nico-lb2qe]

Update) now im 18, still i never showed symptoms still having acc. Thank you for the sweet comments im doing really good.

[@amberhart1268]

Nicolás Cuervo this is wonderful to hear!! I'm so happy that you're doing so well.

[@Nico-lb2qe]

Amber Hart thank u, god bless your family and your daughter!!, idont have any seizures too

[@adityatiwari9018]

I wanna talk to u...my fetus is diagnosed with acc....i m in tension....plz connect wid me on watsapp [phone]

[@Riaberi85]

Prem tiwari hi Prem..
my baby boy has ACC...he is 3 month now....
there is a group in facebook "Ventriculomegaly" there are some cases with ACC babies and they have a separate group...if you want to have a look.
how is your baby doing?

[@myluxury1st]

Amen! So glad to hear this. You are very lucky and blessed. I wish you nothing but the best. Thank you for posting and letting us know. You are an inspiration to many and don't even know it. Many blessings. (I have a 2.5 year old who is severely developmentally delayed.)

[@angelicataylor4875]

My god she is too cute and I busted out laughing when you grabbed her by the pants and pulled her back...something I would do hahaha. My son is 5mnts old. And he may have acc

[@liveloveblog8274]

shes looks very normal

[@immzbossyingrid5365]

Baby❤️Baby is a Blessed Baby..he’s so sweet💕..Look at Gods 🌟plan in action it’s never what we think..Baby Baby is active and alert✨💫AND 🥰 LOVED❤️❤️❤️

[@BransRants]

im so happy shes crawling.

[@TheMajlisLife]

My baby was diagnosed with partial agenesis of corpus collosoum, hydrocephalus, and a brain cyst and I’m 37 weeks pregnant. It was such disappointment and took away the excitement of pregnancy. I’m now just doing as much research as possible to educate myself on this condition. My c section is scheduled for a few days from now. Hoping she will be okay.

[@amberhart1268]

@@TheMajlisLife I empathize with you… i need to ask, why a c section so soon?.. those above lists of issues should not warent the Drs taking the baby so early… all those things will hv less of a negative affect on the baby than the delivery of a baby not fully developed. My advice to many parents is to advocate for your baby against the Drs.. they love to scare us moms; but THE best place for the baby is the moms womb so everything can finish developing. hugs to you

[@TheMajlisLife]

@@amberhart1268 I guess the C Section at 37 weeks is more so due to the fact that I have diabetes and my sugars have been high. Doctors worried about the baby getting too big. The head is already measuring 3 1/2 weeks big, probably due to the hydrocephalus. My first pregnancy was a preeclampsia and they had to take her early as well. So the doctor is also worried about that creeping up. So far it hasn’t though. I’m just more so worried about the whole brain stuff going on. Fluid in the brain seems to be increasing every time I get an ultrasound.

[@TheMajlisLife]

@@amberhart1268 we were actually confused because after the MRI, the guy spoke to us and said that he didn’t see any sign of hydrocephalus, no pressure, or swelling of the brain. All he did see was a cyst. Which he thought the ultrasound techs might be mistaking for a pocket of fluid. As the cyst sits right in the middle of the two ventricles. But he didn’t see anything else. And he said that most people can go their entire lives not even knowing that they have a cyst. So it was reassuring for us. But then when the doctor reviewed the final MRI report it came back that the baby has not just the cyst but hydrocephalus and partial agenesis of the corpus collosoum. I don’t know why the MRI guy wouldn’t have initially seen that on the MRI images. It’s all just a roller coaster. They will do another MRI after birth.

[@myluxury1st]

My son has Dysgenesis; which is Partial absense. He's almost 3 and not crawling or doing anything. Not sitting up or standing, talking, any of that. This gives us some hope. Just going to keep him on his knees as well.
Our Early Intervention has sucked. He's been in EI since he was 9 months and hasn't gotten anywhere. Most of the Infant Teachers didn't know how to help him. So I'm almost at the point where he won't be able to have an EI Teacher due to him turning 3 soon and I feel so defeated because they have not helped at all. Thank you for posting this video. I already try to have him on his knees; but I will have him on a mat and doing it more often. Even his PT hasn't helped in this area. I am just at a loss really. Constantly researching. Again, thank you for posting. This is inspirational. I know our EI won't help us with Gymboree. They have not offered any resources at all.

[@amberhart1268]

im so sorry to hear you hvnt had the support you need. Have you been to a neaurologist?... has anything been mentioned about muscle tone? Has he been cleared of syndromes? I guess im asking if its an isolated event? the partial absence is the only issue found.

[@reign6of6e6terror]

She look and moved so damnd ......normal

[@amberhart1268]

indeed she does. we feel very lucky

[@thewillesfamily]

My daughter, Aubree has complete ACC. She was born in 2015. Since her birth she has only ever amazed us with surpassing her developmental milestones much earlier than most babies. Smiling by 7 days old, laughing by one month, rolling over by 2 months and spelling/reading by 14 months. It seems she has an incredible memory and awareness of everything around her.
It looks like Layla is doing great too! Thanks for posting! Please feel free to subscribe to my channel to see how Aubree is doing with ACC. I look forward to more vids of precious Layla!

[@rupaayapilla2824]

I have seen Aubree's videos on your channel. She's adorable. I can't believe that she has complete ACC. Did you guys ever get an MRI done? We came to know a couple of days ago during the 20 week scan that our baby has ACC. MRI is scheduled for next Wednesday. Praying that it will say everything is normal. I am really scared at the moment.

[@medoytgaming173]

Great, but i have a question please, did she has any support like occupational therapy or speech therapy or her progress was by her self without any further support

[@angimayraful]

Love is the best foundation in this unpredictable journey you are about to encounter. When you know you will love your baby through it all, no matter what, you can go through anything with them. My daughter has ACC, she is now 16 months and doing well despite this condition. Hope for the best and just allow love to help you endure through. Your baby is beautiful and special no matter what.

[@LAT6669]

MY GRANDSON DIDN'T START CRAWLING TILL 14 MONTHS & WALKING AT 2, HE HAS ACC AND SEPTO-OPTIC DYSPLASIA

[@jessiejo81]

Hi, I have partial acc and didn't know it until I was 32 (just 3 years ago) I think this is mostly because this issue was just being discovered when I was a teen. You're doing really well getting her the help she needs, and I'm happy for you both! Also I hope you can help her to relax and grow up like a normal girl!

[@joanned8090]

jessiejo81 - how was your acc discovered? Do u have any problems with social skills? Daily living issues?

[@jessiejo81]

Joanne D my pacc comes with seizures. The silent ones where you just zone out fore a minute in school they said i had adhd. So when i started working to hard(60hr weeks) i had several grand mals, and the emergency room doctor sayed "youre epileptic y dont you know that" also "good news no tumors" then refered me to a neurologists who told me about my acc about a week later. I have some socail skill problems i dont like crowds of people, and balance is a big problem for me, but compared to some i have it easier. When i first read the list of acc symptoms, it was like describing myself in checklist format. Not everything fit but most things did.

[@angelicataylor4875]

Oh wow! I'm glad you found out when you were a teen instead of being 32 year's old and just finding out.

[@angelicataylor4875]

@@jessiejo81 I too have a lot of those symptoms so much undiagnosed and people say I'm dumb, not normal like everyone else, I'm slow to grasp things/learn thing's/etc. I have memory problem's which seem to be getting worse, I have issue's with saying my word's right especially if my emotion's are high and other time's I sound highly educated. I just wish these docs would do necessary test's on me so I know my full medical history and know really know what all is wrong with me,uhg!

[@liveloveblog8274]

i have also baby with corpus colosum problem im so scare what gana be.

[@myluxury1st]

Hi. I'm curious to know what has been happening? My son is 2.5 and not hitting any milestone. Therapist and Early Intervention has not been of any help.

[@nataliemanson1099]

Absent views on csp should i be worried, 16 weeks

[@swallace9871]

Hi, my niece has ACC. She is 3 months old and she is not gaining any weight since birth. Mom feeds her every 2 hrs and she drinks 3 to 6 ounces. However, the neurologist is not telling the complete truth. We don't know what else we can do for her. Any suggestions? Is this normal?

[@amberhart1268]

Sanam Wallace Babies with Acc can sometimes have thyroid issues. I would seek advice from a pediatrician and a lactation consultant if she is breastfed. Baby should def be gaining weight right now so this is a large concern.

[@novemberthe18]

How is your niece now?

[@kimhuynh4945]

Can I ask you what the name of your neurologist at Stanford is? Thanks!

[@jeonjungkook-zl8tl]

Please help my son have ACC he is now 2 years and half years old he can't sit down by him self he can't walk or talk or eat well and he don't seem like very aware about what happens around him can u please give me advice and if there is. Hope for him to be cured

[@amberhart1268]

jeon jungkook hello, I’m so sorry to hear your son is 2.5 yrs and has struggled to meet milestones... My first thought is: have you hd genetic testing done to see if he has more than just ACC?.... sometimes, ACC comes with a ‘syndrom’...
Also, where r u located? In the US we hv Early Intervention services that are offered for free. A specialist for physical therapy and speech will come into your home to help the child develop. .... Is that available in your country?
When did you learn of his ACC?
Sending hugs to you and your family, I know this is a very difficult journey. 💜

[@jeonjungkook-zl8tl]

@@amberhart1268 Iam from Algeria and in my country we don't have genetic testing and the doctors don't know much about acc I didt know my son was ill until he turned 11 month after doing scanner for his head

[@amberhart1268]

jeon jungkook kindly email me... We are involved in a longetutidal study with UCSF. A Dr who is focusing on the disorders of the Corpus Callosum is the lead researcher. I can email you their contact info if you’d like? Also, check out the website:
nodcc.org/corpus-callosum-disorders
[e-mail]

[@summayasylvia4640]

Really she looks like normal ..

[@ponyoponyo1924]

My baby is 1 year old but can not set down alone or crawl he was diagnosed with acc but he can roll over and he is so active he learns everyday something new but slowly. Next week he'll start a course of physiotherapy. What made me frustrated is that the physiotherapists in that center are not familiar with acc and they had told me that they can't promise me my baby will set or crawl or anything . That put me down but ur Video and the comments have made it clear that it's normal for our kids to be delayed and they will catch up with a little bit of help right? I live in Germany

[@myluxury1st]

Hi. I live in the USA and Physical Therapy has not been helpful; nor do they know anything about this. They just are not helpful and I feel defeated at every session. I'm curious to know what's been going on with you and your family. Thank you.

[@kiranbajetha4022]

Pls share the latest video of little one and how she is going on her life pl tell

[@amberhart1268]

my channel has a very recent update 💜

[@kiranbajetha4022]

Hi mam , I just watched the latest video of little cutie pie..pray for her good health...my daughter also delayed milestone with ACC ..she is 11month old now but no much improvement

[@blazeclapes5042]

Hi Amber iv watched ur video im 27 weeks and been told my daughter is missing her back part of her corpus callosum they telling me end pregnancy ir daughter is doin so well and is beautiful any advice please 💗

[@amberhart1268]

Hello!!! Im so sorry youre going thru this right now... I can say there is still so mich that many Drs globally dont understand about this condition, nor do they (i believe) give credit to the ability of the brain to re wire itself and overcome physical obstacles. Having said that, hv you had any more tests regarding potential syndromes? (Amnio)... I would advise you and everyone to get second and third opinions if you are being told to terminate so that you may make a fully informed decision. Hugs to you. 💜

[@karenbaez5273]

Are you in the united States? Have you had any issues with feeding?

[@amberhart1268]

Karen Baez hello, We are in the states... and aside from now hving a very picky eater as a toddler, we’ve had no issues thus far.

[@karenbaez5273]

@@amberhart1268 thats great. I on the other hand I'm having trouble my 10month old chockes on everything. We're learning how to sit at the moment with early intervention we just got diagnosed with pachygyria and mild hypoplasia of the corpus callosum.

[@myluxury1st]

@@karenbaez5273 Hi! Curious to know what ended up happening? My son is almost 3 and is Gtube fed.

[@mohamedharis1824]

what age did your baby roll over ??

[@amberhart1268]

Mohamed Haris she was 19 weeks exactly. ... sat up at 5 1/2 months... and crawled at 9 1/2 months.... walked at 13 months

[@alimacit9518]

my wife 20 weeks pregnant We just learned that he has CCS
Doctors don't want the baby to be born could it be a normal child pls answer me

[@amberhart1268]

alihma Macit Docters tend to not know enough about this condition as its just newly been discovered prenatally. We were told that abortion would be an option for us as well. We chose to get some more opinions and more tests. Amniocenteses could tell you if the baby has a genetic issue that could affect their neuro development. We also went to a well regarded hospital for a fetal MRI and speak to a neurologist. They gave us a better outlook and said we had an 80% chance of child being nearly unaffected by the condition.
I hv a video speaking about this called ‘the decision’. Hopefully that may help. ... do your research and look more into the condition. There are helpful groups on facebook too. .. if you hv any other questions let me know and hopefully I can steer u in the right direction for answers.

[@alimacit9518]

@@amberhart1268 we will do the last test we a wait
good results
Watching your video gave us big hope thx xx

[@Needanangel2]

alihma Macit your baby will be perfect 🥰