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An Introduction to Ellah, and agenesis of the corpus callosum

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November 15, 2014 by Benji


This blog post is a long time coming. My wife Sarah and I have thought about sharing our three and a half year old daughter Ellah’s story with people on more than one occasion.  We haven’t because we thought that this could be an “invisible disease” and she would have the opportunity to choose as she got older if she wanted to share her story. We didn’t keep is a secret per se from people who are close to us, but we just didn’t talk to most people about this. It turns out we were wrong and that is why we are now  sharing Ellah’s journey with agenesis of the corpus callosum.

Let’s back up; when my wife Sarah was 20 weeks pregnant, we had a routine ultrasound and the doctor told us that it appeared the baby had Agenesis of the Corpus Callosum  (ACC). Agenesis means it didn’t develop.  The Corpus Callosum is the main bridge of nerves in the brain that connect the right and left sides of the brain. The doctor advised us not to Google  ACC because all the information out there at that time came from bloggers / parents writing horror stories and that there was no real accurate information on the internet. Due to the lack of clinical information available, he suggested that we should be optimistic, follow the suggested medical plan, and do our best to keep a good attitude. Being the defiant human I am, I immediately Googled ACC and read the first few sites that popped up. The doctor was right, It was all horror stories and things I didn’t want to hear; people talking about children who had passed away or were very low functioning with all sorts of horrific problems that I couldn’t imagine. I said uncle, and didn’t do any more research into ACC.

Sarah and I, along with our older daughter Na’amah and the help of occupational therapy, physical therapy and speech therapy, spent the next 3 years working on teaching Ellah to do basic things: learning to sit up, happened at about a year; learning to crawl, happened about 2 years; learning to walk, happened at about 3 years old.  Even “simple” things like feeding herself did not come naturally and required months and month of help.  She still struggles to use a utensil for eating, as coordination is one of the most difficult things.

All this time we thought we were alone, that there was no information available to us or the doctors about what the future has in store for us. through a series of strange events a year ago, we found out about an organization called NODCC,the National Organization for Disorders of the Corpus Callosum. The week before Thanksgiving 2013, my older sister Miryam was talking with a friend.He asked her who inspires her and Miryam replied, “Ellah, because no matter how difficult a day she is having, whether it’s another stay in the hospital over a cold, or a rough therapy session, or stomach issues, at the end of the day she smiles, laughs and is happy to be around the people who love her”. Miryam’s friend started asking questions and quickly asked “does your niece have ACC?” Miryam replied “how do you know that,It’s such a rare condition?” It turned out this friend had a daughter who passed away from ACC! Miryam mentioned how frustrating it was for us to have no information, and feel completely in the dark about Ellah’s condition and prognosis.  He told her that while DMC Children’s is one of the best hospitals around, most doctors have not encountered ACC and we needed to search out the NODCC.

We immediately looked up, found and contacted the NODCC and we found a ton of information about ACC.  We found out about a bi-annual conference, Facebook groups and other great support!   Sarah and I went to the 2014 conference in Boston; we found other people going through the same thing,people who were able to give us advice and insight.It’s amazing what a difference a year can make. Ellah is growing physically and cognitively. She understands everything you say, has some signs and words she uses, is running and learning to ride a stage 2 bike;and while all that is happening, we are learning more about her condition, and how to best help her! Feeling like we no longer in  in the dark and knowing we are not alone, has changed our lives.

Every person with ACC is different. We met some amazing teenagers and young adults with ACC, and have some new found hope and encouragement for what Ellah’s future may be. We also got a dose of reality about ACC being a hidden disease, or to clarify, it will not be a hidden disease. Studies have shown that even the highest functioning people living with ACC have issues with social cues, math can be difficult for many, picking up on subtleties  in jokes and ironies can all be issues for folks with ACC, as well as , general problem solving. But many live ”normal” lives;they are doctors, lawyers, and accountants, artists, dancers and other professionals. In the near future, I am going to be posting some of the incredible things that have happened with Ellah, among them,her Neurosurgery, trials and tribulations with hospitals and her (seeming) superhuman strength, both physical and emotional…

There are two main reasons that we are sharing this information about Ellah. The first is that if a child is born today with ACC and their parent searches online, I want them to find positive and helpful information about ACC. The second is because of something we learned called Social Scaffolding, at the NODCC conference, we learned that the more people who know Elllah and about ACC, the more we can create an environment around her that supports her growth and learning.

UPDATE: this is being added after the original post was published. The Friendship Circle of Michigan has asked me to guest blog for them on topics about ACC and being a dad of a child with special needs – click here to see those posts. 

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47 thoughts on “An Introduction to Ellah, and agenesis of the corpus callosum

  1. jeff p. says:

    thank you for sharing your story, with trials and tribulations no one should ever have to travel alone. the strength of your family is an inspiration!

  2. linda says:

    My 38 year old son was born with ACC. He didn’t have a CT scan until he was 10. He had a global dev. delay, He worked with early interventionist and attended nursery school. He was in language classes, had some OT therapy and speech therapy
    He did not have seizures or hydrocephalus. He did have bowel problems. He required surgeries to remove disfunctioning bowel and then had a bag and stoma for a year. The last surgery put him back together and we pray this remains the case. Socially he has friends he has known since public school. He has a basic level diploma. He drives, owns a truck. Presently he works part time as a cleaner. He can be quite OCD about keeping “stuff”

    • Benji says:

      Linda, thank you for sharing your story – I love meeting and hearing about adults with ACC who are living a “normal” life… or whatever that means. I know how frustrating the surgeries and hospital stays can be. He have had multiple of both :/

  3. Sue Auerbach says:

    Mazal Tov on all your achievements. I have 4 children: on with severe Tourette’s (tics, swearing etc.) and depression, one with Cognitive delays, and two with severe ADHD. We have always been very vocal about all of our issues. It has helped people be comfortable with our family, to laugh with us and cry with us. Mostly, it has meant that our kids have never been bullied or friendless. It has also allowed others to tell us their stories. Their are very few “normal” families out there. Welcome to the club!

  4. sharon says:

    Found your post via FB from an NODCC-er. My daughter (acc & other stuff) is 14. She was became a Bat Mitzvah last year. We’ve been to 3 (or maybe 4) conferences; always a place I can breathe, cry, laugh, and most importantly for me, feel like I can let my daughter just “be”, quirks and all. Society is not always kind; “our” ACC family is like no other. Good luck.

    • Benji says:

      Hey Sharon, I’m looking forward to meeting you in chicago… I think what you just said about society not always being kind is part of why im posting this – at the conference in Boston, they talked about social scaffolding, and im hoping that the people around her will create a safe environment for her.

  5. prayingforyou says:

    Inspiring post! I just didn’t understand what you told your uncle, and what he had to do with anything.

  6. Dawn Pace says:

    Thank you for sharing your daughter’s story. My son has C-ACC and is 3. I found out the same way you did. I hope one day my husband can be as courageous as you are and be ok with talking about it. I am a strong advocate for our son but my husband isn’t there yet. Maybe one day 🙂

    • Benji says:

      Dawn, thank you for sharing. Please feel free to reach out to me, I have no problem talking to your husband if he’s looking to talk to somebody who knows what he is going through. There aren’t many of us around!

  7. […] my wife Sarah was 20 weeks pregnant, we had a routine ultrasound and the doctor told us that it appeared the baby had Agenesis of the […]

  8. Haley says:

    Benji,
    I am writing as a fellow parent of a child with ACC. I stumbled upon your post when doing a general search of ACC which I would say I do a few times a year. I was immediately caught by your first few words as my husband and I have always kept my sons ACC a “secret” I suppose you would say. We found out when I was 16 weeks pregnant with him and his twin sister and it was confirmed with a fetal MRI while I was still pregnant at 22 weeks. We also did the genetic testing to see if it was in conjunction with any syndromes etc. which it was not. So he has isolated complete agenesis of the corpus callosum. When we were told, we were absolutely shocked and also googled and immediately stopped after reading the horror stories. Our doctors told us that there is a wide range of possibilities from profound mental disability to average intelligence…..that was the worst day of our lives….I felt physically sick to my stomach. We spent the rest of the pregnancy hoping for the best and preparing for the worst. I remember thinking that I just wanted him to be able to know happiness and feel what love is and have meaningful relationships and we could deal with the rest….granted it would be hard. We also told ourselves that the reason we couldn’t find any positive stories on the internet was because perhaps there are more people that thought just like us and didn’t want to share and for some reason people are more apt to seek out help/support when things are going badly not when they are good. That being said, I do check periodically for a positive story and thus found yours.
    More about our son…He is 4 years old and was born 10 weeks early with his twin sister. He and sis spent their first two months in the hospital as preemies. I feel that his sister has been such a positive example for him and we truly have tried to treat them the same and have similar expectations of both of them. We also had a surprise little brother 18 months after him so all three of them play very well together. The younger has been very good for him since he has been a touch behind on some things he still has the younger sibling as an example as well. That being said he, like Ellah, did not sit up until 12 months (our doctor also attributed this to lung issues and not being able to breathe as well sitting up but I definitely think it had a lot to do with core strength and decreased tone), he walked at 19 months, rode a bike at 3, talked at 2ish. He is in preschool and knows all of his letters and their sounds, counts to 20, can tell you the month/date/year, dresses himself, feeds himself, zips his coat, sings songs and most importantly is so very happy on most occasions. He plays and interacts with others -preschool early intervention has been very good with a social program incorporated with school that encourages seeking out others for play. He is still on the clumsy side and definitely has decreased tone when compared to the average child but he doesn’t let it stop him at all–he climbs all around those huge indoor ball/slide playplaces and outdoor playsets and holds on to the monkey bars etc.
    I say all of these things of course because I am so very proud of him but also because I think it is nice, like you mentioned, to be able to hear a positive experience that doesn’t sound so scary. It is easy to feel alone with this since it is seemingly so rare or at least not documented very well….I have seen so many different statistics and heard so many different opinions that I don’t even listen to them anymore. We are still not to a point that we have shared the ACC with anyone other than his doctors and school professionals (not even family) because we fear that others will hear it and put him in a box and let it define him. We don’t want every conversation about him to center around it…..he is simply our son and he is happy, he loves, he learns, he communicates and he has positive and meaningful relationships. 🙂
    Thank you so much for your post!!!

    • Benji says:

      Haley,
      Thank you for your comment, it means a lot to me and Sarah whenever we find someone who can relate.

      Your twins and our Ellah are the same age. Its possible they can meet and play together at the conference in Chicago next summer. and you hit the nail on the head – one of the main reasons i’m blogging about this is because i hope that when kids are born with ACC and their parents google it – they find resources! Have you seen that my ACC related posts are now on the friendship circle blog? here is the link. http://www.friendshipcircle.org/blog/author/ben-rosenzweig/

      All the best –
      Benji

  9. Diane Surmon says:

    Benji I am writing this as a parent of a daughter who is now 40 yes old she was diagnosed with ACC when she was about 4yrs old she was diagnosed at Great Ormond Street Hospital London, we lived in South Wales at the time. At birth Helen had hydrocephalus then at 12weeks she had brain haemorrhage which led to Jacksonian type seizures we were told it was very rare and her prognosis was very poor,we were told she would be spastic mentally retarded ,partially sighted she would never talk or walk she would be nothing else but a cabbage and if I was you I would go home and forget about her. We took her home and worked hard with her she was on the pilot scheme for protege we had to teach her how to sit up how to suck how to blow how to feed herself ,she achieved those things. Helens spine started to curve at 11yrs old she had surgery at 16yrs old she also has a deep pain threshold and that was a worry when she had a twisted ovarian cyst she needed a total hysterectomy 2yrs ago which she recovered from very well. Helen has very good understanding but is unable to communicate fully ,she is in a home with other young people with learning disabilities the reason being I needed spinal surgery and the surgeon would not operate whilst Helen was living at home . Helen does have a good quality of life she went to Euro Disney for her 40th birthday she goes out for meals ,she also enjoys shopping and swimming and going to discos.
    At the beginning of my pregnancy I was given a hormone pregnancy test called Primodos , I had a dreadful pregnancy there were not the scans about back then to check the foetus I am sure that is what damaged Helen, I belong to an Association that is now looking into it.
    Helen has grown into a beautiful young lady she is very determined, very happy and gives a lot of love she enjoys all sorts of music ,she also does 46piece wooden jigsaw puzzles. Helen knows when she is dressed in nice clothes she loves her perfume and her jewelry . It was hard work but it was worth it we have a close relationship

    • Benji says:

      Diane, thanks for sharing your story. Im sorry that you and Helen have had such a hard go. But when you say “Helen has grown into a beautiful young lady she is very determined, very happy and gives a lot of love she enjoys all sorts of music” i know that this is the amazing thing about kids with ACC – they smile and they love life!
      All the best –
      Benji

  10. Debra says:

    Thanks for sharing your family’s inspiring story. I had not encountered this condition before reading your blog–but know that it’s doing what you intended, not only by offering a positive story to parents of children like Ellah, but to educate the rest of us.

    • Benji says:

      Debra, thanks for your kind words! that’s EXACTLY what Im trying to do – Raise awareness for ACC so when someone searches it, they find good information.

  11. candace says:

    Not everyone with this syndrome has a lot of problems I mean I have this along with klipple file syndrome and spinal bifta yes I am different what person isn’t yes it takes me alittle longer then most my hole corpus closum is missing so I use one at a time no I am not good with math I do love reading, writing I get headaches more then most I don’t have a hard time making friends I just don’t feel like it’s a big thing to have yes I did have a hard time learning in school only because my teachers would get so angry if I asked more then once how to do things so I stopped asking and they wouldn’t teach me they would just make me copy things even if I wanted to learn I would get yelled at because I wanted to do so and not just copy paper I didn’t get taught to read tell I was 9 because of the same reason yes I do get upset but what person doesn’t I am 23 and I have a daughter with part of her corpus closum underdeveloped and also with klipple file syndrome and dandy walker syndrome I am a good mom just because your child has these problems treat them like a normal person not as if there’s something wrong with them and as if they don’t understand you because if they do they won’t like you when they get older btw music such as soft or piano music animals cas down the brain helps you think also things we like to do can calm down a child with this problem if upset believe me I know 🙂

    • candace says:

      And also my mom was told I would never walk talk or anything the doctor tried talking her into putting me up for adoption but I do walk I do talk I am 23 and I was told the same for my daughter and switched doctors because of it my daughter is starting to walk and she starting to talk she is almost 2 I was 3 but the time I could do all these things doctors arnt always right

  12. Caroline Parke says:

    Hey all, great that there are so many people discussing and sharing stories about ACC.

    For a number of years, I would wake in the morning and be sick before I could do anything else, I went along to the doctors, who sent me off for a cat scan. Whilst laying still I noticed via a little mirror before me, there stood in the distance were 4 people looking at my scan , you can imagine my thoughts at that time. however, when spoken to, I was told that everything was fine and they were unable to figure out why I was sick for many years.

    A number of years later, whilst out with friends drinking rose wine, I slipped and hit my head, I felt ok, just a little dizzy so for safety measures, I took myself off to the Hospital who wanted to give me a cat scan just to be sure. Again, there stood more than a few professional people holding my scan up in the air. Once sat up I was told that I was absolutely fine. Then I heard, however, you do have Agenesis of the Corpus Callosum. Well, you can imagine my expression! once explained to me I went home to relax and yep, I googled it. When a doctor tells you that you are absolutely fine, and very very lucky, and to give yourself a hug you cant not look it up when home.

    Today, I am 40yrs old, who has never touched rose wine since 🙂 I strangely do not suffer with sickness as much as I used to but apparently being sick is a common symptom if you have ACC.

    At least now I know why I am so terrible at mathematics. My brain just will not work it out, I try and I try but nope, not happening. Yet I write poetry with a huge passion, which I hope to publish sometime soon.

    My only wish was to see that scan, just for curiosity really.

    Much love to Ellah, beautiful name.

    To all ACC ers out there and their families. YOU ROCK. Hug yourselves for being you.

  13. […] two daughters, Na’amah (6) and Ellah (4). Ellah has a rare congenital brain defect called Agenesis of the Corpus Callosum (ACC) This extremely rare disorder presents itself differently in each person though there are […]

  14. julie farley says:

    This is the first I’ve heard of ACC. My daughter was diagnosed with a De Novo interstitial del 1p (31.2-32.1) and I’m still finding new research including the finding that most 1p31 deletions involving 31.3 show ACC. While looking into the symptoms I’m now requesting my daughter have an MRI to rule out or verify ACC. She is now 10 yo and has shown everyone of the symptoms since birth.

  15. Kenyatta Ingram says:

    My name is Kenyatta Ingram and my son Mercy Merriel was born with acc and I had no I deal what to do and have no where to turn my son is know 9 year old and I have such a hard time he didn’t hear and does not talk is it so hard to get them to come to the house because I do not have a car and I am NOT able to go to work because I’m always with him I would like to get communicating with you because he get so frustrated I love him so much he is such a joy in my life I just want to be able to help him or if you guys can get me some information about organizations that could help us out I would really appreciate it thank you all the information that I can get would be appreciated

    • Benji says:

      Hi Kenyatta,
      do you know about the NODCC? if not check out http://www.nodcc.org there are some resources there. Where do you live? I may be able to poit you in the direction of something local.
      Hope to meet you at the conference in Chicago!
      Benji

  16. Troy Evans says:

    G’day from down under,
    Yep looks like I am in the family with a family member with ACC. Our daughter, Candice was diagnosed with it a few months after being born. Nothing was seen, or picked up during the pregnancy but after the birth we knew something’s were just not right. She was born with congenital vertical talus in her foot, bilateral sensineurol hearing loss in both ears, form fruste on her upper lip, diagnosed with severe global development delay, microcephaly and hypotonic cerabral palsy. Since birth she has been inconstant daily pain, with lack of sleep. We worked out when she was about 2 that it was defiantly her bowels and stomach causing her so much grief, and we a still trying to get an answer on that. She has had a bowel biopsy and we have been advised she has a hypermobility bowel . We have also changed her diet to dairy and gluten free, whilst we await allergy testing. Even though we know she is not celiac, we are still going gluten free and think this is helping, but her diet is extremely limited. Candice struggles to do number twos so everyday she needs laxatives and or suppositorys to try and get it through,which can be very uncomfortable for her. Candice is going on two and a half years old and can’t talk, crawl, walk , she can roll on to get stomach but can’t roll back, obviously can’t feed herself and struggles to pick things up ( she has done but unsure if it was just luck ). Most of her life she only probably slept five hours a day which has been a massive strain on both me and Jen. Her sleeping has improved a little but nothing to get excited about. We have a seven year old son who loves Candice to bits but saying that he has missed out on a lot, not having a sibling to play with. So yes it is a hell of a bumpy ride and more tears than laughs with Perth, Western Australia’s capital, two and a half hours away make specialist appointments tiring and long days!! Just thought I would touch base and let you know our story, that in reality is just beginning! Troy Evans

    • Benji says:

      thanks for sharing… trust me – we know about the #2 struggles. we go from extreme constipation to extreme explosives :/

      You guys will get through it! One day I hope to visit Australia, if I do, I’d love to meet you guys!

  17. Jessica Mckenney says:

    My story with Corpus Callosum started about two months ago.
    I am 26 weeks pregnant with a healthy baby boy who has complete agenesis of corpus callosum
    I just did the fetal mri last week
    At this point I am heartbroken and from what I have read there is no real answer on what he might be like or not
    The doctor says lets wait and see who he says he is when he is here.
    He also said something like 70% chance of him being “normal”
    I am anxious and nervous for what this will mean.
    Holding out hope

    • Benji says:

      Jessica, welcome to the club (not that you asked to be here). please know that you are not alone on this journey! what part of the world are you in? I may know people with ACC in your area.

      As far as doctors giving you percentages of “normal”, they cant know today. Take your time with your baby, and see how he/she develops. but trying to ride statistics will drive you crazy!

      Have you heard about the NODCC and the conference this summer? check out http://www.nodcc.org for more info

      • Kerrie Stewart says:

        Hello Benji and Readers,

        A very powerful read Benji, which catapaulted me back to the childhood of my youngest son, now almost 27 who has Complete ACC.

        There are a number of readers here who are wondering what might be the future of their child with C-ACC or P-ACC. Every child’s journey will be unique and special.
        So I write to provide an account of one child’s path to adulthood with the hope of giving some encouragement for the future, recognising that my son’s condition did not include health issues, as can be the case for others.

        He was the youngest of four; his sisters and brother all a good deal older than he and I was the “experienced” mother who was very cruisey about allowing him to take his own time to reach developmental milestones. After all, he was carried around much of the time in his infancy by doting siblings or toys were brought to him and so one of his later-reached milestones walking, was delayed…about 18 months. He also spoke well and “on time” so that particular developmental skill was no indicator of a lurking problem.
        There were other clues that, with hindsight and information, were recognisable as markers of the absence of his CC.

        As time passed, he grew well and happily, attended childcare and later pre-school and finally went to “big school” without much difficulty…no socialising problems and able to participate well in activities.
        But very early in his first year of primary school, his experienced and very observant Grade 1 teacher informed me that his manipulation of instruments (pencils, scissors, glue pot etc) showed signs of being more than awkward and she advised me to take him for developmental assessment.

        Once we attended the Clinic, he was assessed firstly by observation and the clinician said straight away that he thought there was “something neurological going on”.

        This insight led to a visit to a paediatric neurologist who ordered a CT scan of his brain, and bingo! there it wasn’t…the corpus callosum was completely absent.
        He was also found to have an arachnoid cyst ( a fluid-filled sac about the size of a golf ball in the arachnoid membrane) which has caused other issues but not relevant here except for the words of the paediatrician who said that the ACC was extremely rare and in combination with the arachnoid cyst made my son’s developmental outlook simply unknown and that I should take him and see how he goes.

        I experienced a shock, the strength of which still haunts today.
        My little boy went from being “normal” with possibilities for future life that could be anything to a special needs boy with unknown but real limitations.

        That was 22 years ago.
        He is now a grown man with a fiancee, a trade certificate, a job, his own apartment and a warm, fun personality who still finds maths a real difficulty.

        How did he get to this point?
        That long ago, the internet was still a bit clunky but I managed to find the ACC Network where I found the information and personal support I needed in order to know WHAT questions to ask of WHICH health care professionals.
        Here are some interventions that were helpful in supporting his development:
        -occupational therapy to help develop bi-lateral actions for learning in a controlled and deliberate fashion things such as drying himself after showering, as well as classroom-based skills,
        -speach therapy for reading comprehension,
        -physiotherapy for developing gross motor skills,
        -functional optometry to help his eyes track across the midline,
        -horse riding to allow his brain to manage his body’s movement as it responded to the independent gait of the horse,
        -swimming to develop the bi-lateral function of his body and head movements,
        -keyboard skills to help with the production of schoolwork (handwriting was difficult for him and laboured so typing was quicker and pretty cool to be able to use a laptop at school at that time).
        -academic suppoort all the way through primary and secondary school as well as later for trade school
        -life

        We just celebrated his sister’s birthday yesterday as a family, by going ten pin bowling…he beat us all! 🙂

        So Benji, I wish you well in your journey with Ellah and congratulate you for providing a warm and understanding space for others to join with you and each other.

        Kindest regards…Kerrie Stewart

  18. Gail clark says:

    We have just found out that my son has acc. I would love to have some information on this. Bc it is all new to me and I want to do the rite things for my son. Plz help.

  19. Yaffa Berger says:

    Hi Benji, I pmed you on Facebook back in October. I don’t know if you received my message or if it got lost. Please pm me. Thanks

  20. Sakshi says:

    Hey Benji. I am 36 weeks pregnant and my baby was diagnosed yesterday in the pre natal ultrasound with ACC. I have no idea what the future holds and what I am supposed to do. I am from India and there are no related suppoet groups or help available here. Well none that I could find. There are very less facilities for occupational, speech and other therapies here. What can I do to help my child when he is born as I am completely lost.

    • Benji says:

      Hi Sakshi, I am sorry to hear what you’re going through, but as you know, I have been there. Do you have access to Facebook? there is a Moms group that my wife runs, and you should join that https://www.facebook.com/groups/740816569313134/ additionally, here is another blog post with more resources http://www.friendshipcircle.org/blog/2015/01/12/what-you-need-to-know-about-agenesis-of-the-corpus-callosum/ if your husband (or partner) is interested, there is a group for dads as well.

      i think that the most important thing for you to do right now is 1) try to stay calm. the future is uncertain, but with uncertainty comes hope. 2) research, try to be armed with as much information about ACC and what services are available to you 3) look for doctors who are flexible and experienced and lastly 4) Remember to love your baby… sometimes i get into tiger mom & papa bear mode and forget that these are children who at the core, just want to be loved like everyone else.

      I hope this helps
      Please feel free to reach out
      Benji

      • Sakshi says:

        Thank you for your kindest reply Benji. The thing is, I am going to be a single mom as I have left my abusive husband. It was scary for me as it is before finding about this ACC thing. And you are right, support is all that can help. Love to your baby girls.

        • Haley says:

          Many prayers to you Sakshi as you navigate this new adventure. As a fellow mother of a son with isolated ACC I remember the feelings of fear and uncertainty when we received the diagnosis at 20 weeks pregnant. Benji has the very best response above! Stay calm and do not panic-YOU CAN DO THIS!!! Our son is 5 years old and is doing quite well! What I wouldn’t give to be able to go back in time to tell my first pregnancy self that it was all going to be okay and just take it day by day! When our son was 2 years old we were at an appointment with his very well-known and well-respected neurologist who happens to have a child with down syndrome and we were asking him what we should do and what to expect and as Benji mentioned you will hear over and over that you will just have to wait and see but he also simply stated “you just gotta love him”. That is really the most important piece! As far as therapy goes we have done a variety of things and early education is very important but we also just started Horse therapy (riding horses with an occupational therapist working with him) and that has been wonderful!!
          Again prayers to you and your sweet baby!!

          • Sakshi says:

            So kind of you Haley. Your words mean the world to me. Yes I have to take it one day at a time. All we can do is give our children the unconditional love they deserve.

  21. Adriana McGlory says:

    I’m literally in tears…..I only have the support of the therapist…It’s so hard going through this By MYSELF…THANK YOU GUYS SO MUCH FOR SHARING YOUR STORY..my baby Brionna was born with tetralogy of fallot and had open heart.surgery at 2months..And was diagnosed with agenesis of the corpus callosum I worry about my daughter and if she’ll be sufficient and that’s it take care of herself if something happens to me and God happens to call me home as of now she’s still not saying anyway it’s just making sounds and we’re working on her standing she’s calling but she favors one side more than the other.. thanks for giving me hope.. Our babies ..they’re angels… seems as if Brionna’s been here before she’s such a happy baby

    • Benji says:

      Hi Adriana, thanks for sharing your story. The Heart Surgery must have been scary!

      Where do you live? maybe I con connect you to some resources.

      Benji

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