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Пікірлер
@_nancy_pants Ай бұрын
Back in the 80s, we had no ultrasounds! I wonder how many of us have brain “abnormalities” & have no idea?
@jakeorion1993 Ай бұрын
You didnt mention what the MRI showed about the brain and what they claimed how she would be. Like the spectrum. Has she had any seizures? Im 31 my partners 26. Both are extremely healthy, and our son is diagnosed with this. We are awaiting our MRI, and we are just in shambles.
@lindsaystafford8149 Ай бұрын
@@jakeorion1993 the MRI confirmed that the absence of the corpus Callosum. They can’t say how she will be because they don’t know. She hasn’t had any seizures
@jakeorion1993 Ай бұрын
@lindsaystafford8149 understood thank you. Who viewed the MRI your obgyn or a pedatric neurologist?
@lindsaystafford8149 Ай бұрын
@ it was the paediatric neurologist
@jamieklennert6213 2 ай бұрын
Thank you so much for sharing your story ❤
@lindsaystafford8149 Ай бұрын
@@jamieklennert6213 thank you for watching
@tiffanyrives2378 5 ай бұрын
My daughter just found out through MRI that her unborn daughter will have Dandy Walker Syndrome, ACC, Anechoic cyst in her posterior fossa, colpocephaly, the left ventricle of her heart is thickened, heart is in the center of her chest, and her kidneys aren’t functioning properly. I’m a nurse, so I’ve done the deep dive into educating myself on the MRI results. I’m scared to death for them all. Your video was truly calming although unfortunately we have many more concerns. I read through all of the comments and find it comforting that so many people lived a full life not even knowing. Best wishes to you and Ava. Thanks for sharing your video!
@SoccerOfficial-YT 7 ай бұрын
My daughter is 8 and her ACC symptoms seem to get worse. Specifically with emotional and violent outburrs! Bedtime is the WORSR 😢 😭
@lindsaystafford8149 7 ай бұрын
Really? This is interesting to me. As Ada gets older, I definitely notice areas she struggles and areas she doesn’t.
@soufiyauzma3524 8 ай бұрын
Hi, how can i connect you
@lindosland 9 ай бұрын
I just want to ask whether you have come across Iain McGilchrist, who has a KZbin channel and is the author of 'The Master and His Emissary'. He is an expert on the split brain and has an important new theory that the right brain sees the whole picture while the left brain is about 'getting things'. He believed that in today's society the left brain is dominating and the right is underused. He also says that studies show that the corpus collosum is mostly about one half inhibiting the other rather than communicating. As Ada grows up, especially in the teenage years when social interaction becomes more complex you might find it interesting to understand his ideas.
@lindsaystafford8149 9 ай бұрын
I haven’t heard of him but I’ll check him out. Thank you so much!
@IsabelThunquest 7 ай бұрын
@@lindsaystafford8149 hello do you have contact info? Email? Thank you
@ttlola5515 9 ай бұрын
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
@ashleethomas2368 Жыл бұрын
And thank you for making this video.... Not a lot on this..... Google just makes it worse
@lindsaystafford8149 Жыл бұрын
It definitely does. If you ever want to chat I’m open to that
@ashleethomas2368 Жыл бұрын
@@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
@ashleethomas2368 Жыл бұрын
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
@RosieDollSerrano Жыл бұрын
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 Жыл бұрын
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
@francawilliam2856 Жыл бұрын
Thanks for giving me the hope to keep my baby, my baby is also diagnosed of ACC!
@lindsaystafford8149 Жыл бұрын
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
@billybassmaster768 Жыл бұрын
My wife is 25 weeks, and our daughter Ember Marie has the same condition. I've been watching your videos for a few months now and you give us a sense of hope that our daughter will be fine. Ada is so adorable!
@lindsaystafford8149 Жыл бұрын
Aww thank you so much! If you have instagram I post more there @lindsay.Farrell.Ann
@lindsaystafford8149 Жыл бұрын
If you ever have any questions I’m happy to chat
@billybassmaster768 Жыл бұрын
@@lindsaystafford8149 You're very welcome. I will definitely follow you on Instagram
@billybassmaster768 Жыл бұрын
@lindsaystafford8149 we will definitely come to you for questions. I'm nick btw
@a0ch Жыл бұрын
Hi, just wanted to confirm that what you did with this channel is definitely meeting your goals! We just got this diagnosis (with some other issues as well - a worse prognosis), and it is great to look at a good case scenario for a change. Your kiddo is amazing! The chance for ACC is 1:4000 so our babies are already unique :)
@jodymarie7543 Жыл бұрын
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
@rochellenicoletta7353 Жыл бұрын
My Grandson, who is still in the womb, has been diagnosed with ACC , we are very very concerned. A lot of tests are being done. You’re story is informative and inspiring. Thank you.
@lindsaystafford8149 Жыл бұрын
If you ever have any questions you can find me on instagram @lindsay.Farrell.ann
@aarzasuri2694 Жыл бұрын
Hii Our first daughter is Suffering from SMA which is life thretning & she is on the wheel chair,it’s a genetic disorder , Im pregnant with my second child & we have done all the necessary genetic tests which all came negative , baby is free from genetic disorders But in my 20th week ultrasound the dr told me the child’s Corpus callosum is missing, I have done MRI they could not see it in the MRI also My midwife has told me to go ahead & abort the baby Are there any chances of the corpus callosum would grow later in pregnancy ? Also what do u suggest shall I abort or go ahead with the pregnancy I already am in love with my baby but I can’t see him sufferring later in the life also with a already handicapped child
@lindsaystafford8149 Жыл бұрын
Would you like to find me on instagram? @lindsay.Farrell.Ann
@lindsaystafford8149 Жыл бұрын
We can chat there
@eliashadavis7013 Жыл бұрын
My ACC little girl is 5 years 4 months old now and I look forward to doing activities like this with her some day. Your videos are wonderful and informative. Thank you for sharing with the world that there's hope and wonderful outcomes and that abortion is not the answer.
@lindsaystafford8149 Жыл бұрын
Thank you so much for that.
@Lily_the_puggle Жыл бұрын
I have total Agenesis of the corpus callosum and i didn't even know until I got checked for an unrelated issue.
@lindsaystafford8149 Жыл бұрын
Oh wow! How old were you when you found out?
@Lily_the_puggle Жыл бұрын
@@lindsaystafford8149 33 years old. The doctor was definitely inappropriately excited about it 😆
@lindsaystafford8149 Жыл бұрын
@@Lily_the_puggle excited? Why were they excited?
@Lily_the_puggle Жыл бұрын
@@lindsaystafford8149 he hadn't seen an adult unaware of it find out that late in life. Especially with it being entirely absent.
@danielleohare3364 Жыл бұрын
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 Жыл бұрын
Thank you so much for sharing yours!
@natashabailey5988 Жыл бұрын
My lil one is missing apart of her brain and seeing this gives me hope. Can you please give me some advice
@natashabailey5988 Жыл бұрын
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 ….😔❤️😭
@antoniojsanchez9194 Жыл бұрын
Thank you for your story 🙏 ❤️
@marycoleman6963 2 жыл бұрын
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 2 жыл бұрын
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 8 ай бұрын
Same here! In my 30s, and lived my whole live without ever knowing! Brains are CRAZY right!?
@elahaniazi8627 2 жыл бұрын
My daughter is 3 years old she has corpus callosum (acc) still she can’t sit, walk and talk😔
@lindsaystafford8149 2 жыл бұрын
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
@imogengardner194 2 жыл бұрын
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 2 жыл бұрын
Can I ask what problems are arising?
@imogengardner194 2 жыл бұрын
@@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 2 жыл бұрын
@@imogengardner194 would you like to chat via instagram? My name is @lindsay.farrell.ann
@imogengardner194 2 жыл бұрын
@@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 ;)
@mbellamy801 2 жыл бұрын
Thank you so much for giving me hope! My son is 3.5 months old and he we were told he was missing this part of the brain. There is a small part of the CC but very thin so im not sure if it could be considered "partial" or a fraction of partial lol. Thanks for your videos.
@lindsaystafford8149 2 жыл бұрын
Hi Morgan! Thank you for reaching out. I’m on Instagram @lindsay.farrell.ann if you ever want to chat
@LifewiththeNazarios 2 жыл бұрын
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 2 жыл бұрын
Thank you for reaching out Stephanie! If you want, you can find me on Instagram and we can chat! @lindsay.farrell.ann
@lindsaystafford8149 2 жыл бұрын
Please like and share to spread awareness!
@falkalthami782 2 жыл бұрын
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 2 жыл бұрын
That’s beautiful! Congratulations on your grandson!
@bitanji6851 2 жыл бұрын
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.
@-millionaire559 2 жыл бұрын
Hi, Does your daughter has any other Brian findings apart from ACC? Such as ACC PLUS?
@lindsaystafford8149 2 жыл бұрын
Hello She does actually. I’ll have to go find her papers for the official diagnosis. If you want to chat more you can find me on Instagram @lindsay.farrell.ann
@Al556 2 жыл бұрын
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 2 жыл бұрын
Hi Alex From what I have researched there is no definitive answer. This is something we will never know unfortunately.
@jessegland3000 2 жыл бұрын
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 2 жыл бұрын
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 2 жыл бұрын
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
@gleejewell1013 2 жыл бұрын
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 2 жыл бұрын
Thank you so much! I’ll have to look for it.
@gleejewell1013 2 жыл бұрын
kzbin.info/www/bejne/Z6uohWOOmsh0p7s If this works… it’s a lady with ACC reading the book👍🏼
@miryasinjafiry2792 2 жыл бұрын
Will u send me the pdf of this book
@LyndaAitabbi 11 ай бұрын
❤
@morganroberts271 2 жыл бұрын
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 2 жыл бұрын
Hi Morgan come find me on Instagram @lindsay.farrell.ann I would love to chat with you
@lindsaystafford8149 2 жыл бұрын
I’m available all the time to talk. I will give you as much guidance as I can!
@zoerad 2 жыл бұрын
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 2 жыл бұрын
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 Жыл бұрын
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.
@meshahall2804 3 жыл бұрын
Hey my son has acc as well but he's not hitting his milestone because they don't offer much support here in Jamaica so use KZbin to help me in physical therapy n social as well it's very stressful sometimes
@lindsaystafford8149 3 жыл бұрын
Hi Mesha! If you want to talk or have questions, you can find me on Instagram @lindsay.farrell.ann It must be so stressful not having support.
@meshahall2804 3 жыл бұрын
Ok ma dear
@lovelydays6919 3 жыл бұрын
You are saving lives ❤️ God bless you
@radhikachigurlla4410 3 жыл бұрын
ACC damaged in infants can walk ,
@lindsaystafford8149 3 жыл бұрын
They for sure can! There are many varying levels of ACC, and some might take longer than others
@talitjiang 3 жыл бұрын
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 3 жыл бұрын
Hi Tali That’s so interesting, I would love to connect with you at some point.
@alejandrazepeda4796 Жыл бұрын
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.
@miss.seattle2055 3 жыл бұрын
Hello I’m currently going through this situation I’m 23 weeks pregnant and given this diagnosis with my unborn son are you available to talk?
@lindsaystafford8149 3 жыл бұрын
Hello! Yes I am. You can reach me on Instagram @lindsay.farrell.ann
@ferkinderkin3165 3 жыл бұрын
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 3 жыл бұрын
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.
@sarahsavery9219 3 жыл бұрын
I would love to chat with you I have a daughter who got diagnosed with ACC when I was pregnant with her
@lindsaystafford8149 3 жыл бұрын
Hi Sarah I would love to chat. You can find me on Instagram @lindsay.farrell.ann
@wendybettencourt6494 3 жыл бұрын
Ada is soooo cute. What a brilliant little lady ❤
@lindsaystafford8149 3 жыл бұрын
Thank you so much! I may be biased, but she’s the cutest!
@sarahsavery9219 3 жыл бұрын
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 3 жыл бұрын
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!
@ofb2126 3 жыл бұрын
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 3 жыл бұрын
That’s an amazing story. Thank you for sharing and reaching out!
@desireetucson7877 3 жыл бұрын
I am 38 and found out I have complete a genesis of the corpus collosum
@lindsaystafford8149 3 жыл бұрын
Hi Desiree. Thank you for reaching out! I’m curious, have you had any difficulties that could be related to ACC?
@desireetucson7877 3 жыл бұрын
@@lindsaystafford8149 learning to ride a bike was difficult. Tying my shoes
@ep4094 3 жыл бұрын
Glad I ran into your video my wife is pregnant and they just told us that our son that will be due soon has acc. I felt the same way you did cause it's just worse cases when I started googling this. Thank you for sharing 🙂
@lindsaystafford8149 3 жыл бұрын
Thank you so much for sharing! I’ll go take a look!
@missmai3037 3 жыл бұрын
My son also has ACC he's 3 years old he hasn't spoken or walked yet
@lindsaystafford8149 3 жыл бұрын
Hi Mai, if you ever want to chat you can find me on Instagram, lindsay.farrell.ann