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Пікірлер
@user-wd5qw2sr4d Ай бұрын
She seems like she is doing great! I've been watching your videos. Old nurse here and just learning about ACC. Thank you!
@sak00013 Ай бұрын
Dear Lyla, you are beautiful and amazing. You are a hope for many. Keep shining bright!
@TheMajlisLife Ай бұрын
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 Ай бұрын
@@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 Ай бұрын
@@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 Ай бұрын
@@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.
@Pakistan-c70 3 ай бұрын
How Layla talk walk what type of treatment u got plz tell me
@thatderangedbunny 3 ай бұрын
You explain things so well and you’re such a patient mom🥰Beautiful, lucky little girl may she continue to prosper 🙏
@MirandaSwango 4 ай бұрын
Thank you so much for your videos on laya’s story they are helping me get through while I wait for more answers from MFM clinic. She is amazing!
@amberhart1268 4 ай бұрын
grateful they bring comfort. Its why I do them… She is now reading and writing in the 1st grade!! I need to do an update video of that. hugs to you momma.. ive been there and know exactly how ur feelin.
@samuelfissehazion5921 5 ай бұрын
Dear Amber Hart, My name is Samuel, and I recently came across your video on KZbin where you shared your experiences. I felt compelled to reach out because my baby girl has been diagnosed with ACC, and she's just 5 months old. Currently, she's refusing milk orally and relies on an NG tube for feeding. However, she has started eating solids a few times a day, managing about 5-6 spoonfuls each time. Despite this progress, she still struggles to fully carry her head. I'm reaching out to you in the hopes of gaining some advice or insights based on your experiences. Any guidance or tips you can offer would be greatly appreciated as my wife and I navigate this challenging journey with our precious daughter. Thank you for taking the time to read this message, and I look forward to hearing from you soon. Best regards, Samuel
@amberhart1268 5 ай бұрын
Hi Samual, for us, we did lots of tummy time to encourage Layla to lift her head… that often looked like me hving her lay on my chest while i reclined.. id either sit up or lean back more depending what encouraged her to move her head… sometimes laying flat on the ground would work…. Why solids so soon? Has a Dr instructed that? Also, where are ya’ll living? hugs to ur family.
@neelamdubey2500 5 ай бұрын
Plz translate to hindi
@Caganhalıc 6 ай бұрын
❤
@poojithaseelam8657 6 ай бұрын
Hi dear amber hart can u share the whole process of her crossing milestones and for that what u have kept efforts in it
@LAT6669 7 ай бұрын
MY GRANDSON DIDN'T START CRAWLING TILL 14 MONTHS & WALKING AT 2, HE HAS ACC AND SEPTO-OPTIC DYSPLASIA
@thomasdacqmine7960 7 ай бұрын
Bb bob 44.
@nataliemanson1099 8 ай бұрын
Absent views on csp should i be worried, 16 weeks
@zakriafarouk8524 8 ай бұрын
Hi my child is also suffering with this problem is there any medicament pls help me
@aartipal6074 10 ай бұрын
Hey hi i want to talk about my baby girl who is 21 months old and she is also have acc
@a0ch Жыл бұрын
Hi, I got to your channel from TT, and I just want to thank you for the very informative videos! The latest ones have comments deactivated so I couldn't comment there. We also received this diagnosis on Monday at my 23rd week scan which was confirmed in the MRI. Waiting for amniocentesis results to check for syndromes. Anyway, it is great to see your channel and see that it doesn't have to be a doomsday diagnosis. Of course every case is different and we can't know how ours will turn out, but your daughter is lovely and amazing. Wishing you all the best!
@amberhart1268 Жыл бұрын
thank you!! sorry for delayed response as i dont hv notifications. Hv u rcvd ur amnio results yet? sending hugs asi know this is such a difficult road to be on.
@husseinelghobashy9995 Жыл бұрын
Wonderful it is mazing congratulations I have a granddaughter not talk yet not walked yet she is nearly same old
@medoytgaming173 Жыл бұрын
What about her academic status. Is she able to study math and understand complex equation
@zakriafarouk8524 Жыл бұрын
Leila is talking but my child until now didn't talk he have the same problem acc
@sq2516 Жыл бұрын
Hallo meine Tochter hatt auch Acc liebe Grüße aus Deutschland
@zulfiyequliyeva1938 Жыл бұрын
@Amber Hart Hello. what is your daughter? My dear daughter was 1 month old. I hope it will be good for my daughter 
@zulfiyequliyeva1938 Жыл бұрын
@Amber hart Hello. what is your daughter? My dear daughter was 1 month old. I hope it will be good for my daughter 
@zulfiyequliyeva1938 Жыл бұрын
What is the life expectancy of children born with corpus callosum? I have a 1 month old daughter :( 
@zulfiyequliyeva1938 Жыл бұрын
Salam . Mənim Corpus kollusumlu bir qızım var bilmək istəyirəm ki , belə uşaqlar neçə yaşında normal həyata başlayırlar ?
@sihamsoso9642 Жыл бұрын
My son has an ACC and he is now two years old but he screams a lot and is bored.. Is all this because of his illness? Or is it just a matter of time?.... He now speaks fluently and walks on furniture and walls... I mean, he still hasn't taken his first step.
@toyanmi03 Жыл бұрын
Do you have a email where I can contact you my son is 1 years old he have ( hypoplasia of the corpus callosum )..
@monanadaf2649 2 жыл бұрын
Hi... Just found out my 4 month old baby girl has ACC Hypoplasia.... She doesn't make eye contact or follow objects.. otherwise healthy and smiles looking around 🥺 No idea as to what this diagnosis means ... I'd be really grateful to you If i could get help as to what kind of therapy is required for her condition... Any Support group to get more info.. BTW Layla is a beautiful baby Girl 😍❤️ God bless her 💕
@Ivaanshrestha 3 ай бұрын
My baby complete 3 month on may 15 and he doesn’t make eye contact or follow objects what’s your update now??
@Ivaanshrestha 3 ай бұрын
My baby complete 3 month on may 15 and he doesn’t make eye contact or follow objects what’s your update now??
@summayasylvia4640 2 жыл бұрын
Em waiting for your kind response plz suggest me therapies for my baby as she is also delayed due to thin carpas collosum..
@summayasylvia4640 2 жыл бұрын
Plz share your face book I'd or suggest me treatments which are good for acc babies
@summayasylvia4640 2 жыл бұрын
Plz suggest me what are therapies other than physical
@summayasylvia4640 2 жыл бұрын
Really she looks like normal ..
@learnwithmkm6623 2 жыл бұрын
Hi how Layla is doing now?
@kiranbajetha4022 2 жыл бұрын
Pls share the latest video of little one and how she is going on her life pl tell
@amberhart1268 2 жыл бұрын
my channel has a very recent update 💜
@kiranbajetha4022 2 жыл бұрын
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
@smailaitihaddadene8008 2 жыл бұрын
Mon fils à acc mais lui a des complication il marche pas il a 2ans
@elahaniazi8627 2 жыл бұрын
Hello my baby has the same problem now she is 2 years but still ahe can not sit and walk
@jerrieudell7174 2 жыл бұрын
My granddaughter was diagnosed with Colpocephaly in November 2021 she will be three next month she is non verbal and doesn’t walk yet she pulls herself up to standing. What age did your daughter start walking? Also could I please get your IG info I would like to share it with my daughter thank you 💕
@amberhart1268 2 жыл бұрын
hello. my IG is weefashionista Layla just barely hit motor skill milestones .. she began walking as main mode of transportation around 14 months.
@jerrieudell7174 2 жыл бұрын
@@amberhart1268 thank you
@mona2099 2 жыл бұрын
My daughter is turning 2 in july and she has yet to walk. She does what a toddler can do at 18 mo. Cruises along furniture, points at things she want, says a total of approx 10 words, understands many though. Socially she is a smiling person and loves company but can be litte introverted and examine books in a long stretch. Seeing layla gives me imense hope that one day iA she will catch up and be just like an ordinary kid.
@zulfiyequliyeva1938 Жыл бұрын
Hello. what is your daughter? My dear daughter was 1 month old. I hope it will be good for my daughter
@mizanurrahaman562 2 жыл бұрын
My son has acc, please help me.He does not neck control sitting and standing
@amberhart1268 2 жыл бұрын
hello. how old is your son? does he have any other syndromes?
@afihasmee6472 2 жыл бұрын
My baby also ACC baby... Now 4 mnth old..she do every milestone very well but she never smile.. I am trying to make smile on her.. Sometimes she respond me... Listen my voice....i had lot of doubt about ACC... If u send ur mail address I send my baby MRI...
@amberhart1268 2 жыл бұрын
does she hv isolated ACC? im happy to answer questions but wud like to emphasize that I am not a Dr. amberhart@ gmail.com
@simplymee9733 2 жыл бұрын
My daughter has complete ACC along with ASP, ventricularmagly and colpolcephaly she's 3 yrs old non verbal about 7 word vocabulary... delayed with speech motor etc. ..... but I'm glad to see someone spreading awareness and speaking on this condition. May we continue to "BRIDGE THE GAP" and share. It's now being said with therapies in OT, PT AND Speech the brain is capable of growing menengies to connect both hemispheres to help in the communications in both sides of the brain. May we continue to pray and be hopeful for anyone with ACC 💝🙏🙏
@zacriana 2 жыл бұрын
Oliver is 3 now and barely starting to say words but he's so freaking smart in everything else. I think his 2 year old brother is teaching him too?!
@mizanurrahaman562 2 жыл бұрын
Dear sister, My son has absent corpuss callosum his brain.As a result he does not neck control Sitting and standing. Now his age 16 Month. Sister please, give me shaire your experience.
@rosysworld..7862 22 сағат бұрын
My daughter has same problem, now she is 8months old.. how is your son now? Rep plz
@ceciliacruz191 2 жыл бұрын
Hi , thanks for posting. God bless you daughter and fam. Does she has any seizures ? .. or showed any episode during all her life ? .. and what about autism ? .. hoping she is always perfectly healthy in Jesus name ... just asking as I’m 24 w pregnant and was told of ACC and those possible symptoms if mild. Praying to God everything will be fine 🙏🏻
@zacriana 2 жыл бұрын
I'm 24 and my son has the exact same thing. It's isolated and entirely missing like hers. He's 3 as of Jan2022. Just like her he's had no developmental issues besides delayed speech but now I know he knows a lot, just refuses to speak. He does it rarely but prefers to be non verbal. His 2 year old brother is already starting with some words so I think his brother is helping him get that verbal confidence 👍 don't stress or worry too much 🖤🙏
@zacriana 2 жыл бұрын
My kid also does not have any seizures. I believe he had 1 as a newborn but never again and his Dr said that a lot of newborn may have a seizure or 2 but it can be normal and never turns into anything worrisome 👌 he's perfectly healthy and very smart and independent. He's like my sidekick and helps me with his brother a ton. I didn't think he'd be so protective and selfless this young?! 😅😭🥺
@amberhart1268 2 жыл бұрын
hello!! So sorry for the delayed response. Layla does not hv seizures and yes this is a concern for ACC babies. Bc of that. I hv delayed Laylas immunizations to keep the possibility of it being a trigger. Was told by her Nero that I was within the correct mind frame regarding that decision. From what I read, the probability of seizures goes down if they had none by age 5.
@suadhamada7055 2 жыл бұрын
Hi may I ask if she’s missing the agensis of the corpus callosum??because my son just turned 3 and he’s missing the corpus callosum and he still doesn’t talk and I’m so worried 😔
@amberhart1268 2 жыл бұрын
yes she is. She did not start speaking till 3.5 yrs.
@zacriana 2 жыл бұрын
My son is also 3 and he's not speaking much at all. I know he knows words but he prefers non verbal. His 2 year old brother motivates him though. He's got isolated complete agenesis of the corpus callosum 👍
@OTOPORTMUSTAFABADEM 2 жыл бұрын
21.02.2022 de tam ACC li oğlumuz doğacak. Süreç nasıl ilerleyecek bilmiyoruz ve çok tedirginiz. Bizi aydınlatabilir misiniz? ACC dışında her şeyi normal ve sağlıklı bir bebek. O yüzden umıtluyuz kızonız gibi sağlıklı olmasından 🙏🏼
@HtcTkn 2 жыл бұрын
Merhaba. Oğlunuz nasıl ?
@zulfiyequliyeva1938 Жыл бұрын
Oğlunuz Nasil ?
@mshafaati3284 2 жыл бұрын
Does she has any developmental delays? I have a 10 month old daughter with partial acc and she has a little delay in motor skills and social skills and speaking.
@amberhart1268 2 жыл бұрын
Layla developed on track until it was time for speech. She was def delayed in expressive language. But has since caught up.
@summayasylvia4640 2 жыл бұрын
@@amberhart1268 plz suggest me therapies
@shahbazbagdadi4642 2 жыл бұрын
Is there any supportive medication for ACC
@amberhart1268 2 жыл бұрын
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 2 жыл бұрын
@@amberhart1268 thanks alot for quickest reply.
@JessicaGonzalez-iw9sd 2 жыл бұрын
I just came across your videos. I have a 3 month old who was born with ACC and she just had surgery on January 6th. She had a hemispherotomy performed on the right side of her brain due to her having too many seizures and risking losing value of life quickly.
@amberhart1268 2 жыл бұрын
bless her. I hope she is recovering well. … She is 3 months? when did the seizures begin?
@adityatiwari9018 2 жыл бұрын
Keep posting.....it gives immense hope to parents having kids with acc....god will bless layla with immense intelligence😍
@adityatiwari9018 2 жыл бұрын
My son is 3 yrs 2 month old now....exactly growing like layla....fingers crossed