This morning, as I was checking my e-mail, I discovered a note to all members of the ACC Listserv--(an Agenesis of the Corpus Callosum e-mail support group that I belong to). This particular e-mail, with a subject line: "Growing up with ACC", put a big smile on my face as I read it, and I couldn't get this blog post up fast enough to share with you here--not to mention get my own hands on a copy of the exciting, new e-book (electronic book).
With his permission, here is the e-mail--directly from him, with the surprising news that I just received, so you can read it for yourself:
"Hi,
My name is Alex Reisenauer I’m 24 yrs old with c-acc. My family joined this list a long time ago and this is my first time posting. After years of thinking about writing a book about what it’s been like to live with ACC and wanting to bring greater awareness about the condition to increase understanding, this month my book, KNOWING ALEX Life with Agenesis of the Corpus Callosum, has come out. I guess you can say it’s taken a life time to write. It’s co-authored by my mother, Cindy and tells how ACC has affected our lives. I have included the description of the book.
BookDescription
Publication Date: September 1, 2012
‘On the day their son was born Rich and Cindy Reisenauer were advised to institutionalize him. Alex had been diagnosed with frightening and unpredictable condition with the indecipherable name of Agenesis of the Corpus Callosum. Simply put, Alex was missing an integral portion of his brain—the band of nerve fibers that connects the two hemispheres.
The Reisenauers chose to take their newborn home to join his two brothers, and face the daily hardships and minor miracles of life with AgCC as a family. Every aspect of Alex’s condition presented developmental, medical, social, educational and vocational challenges. Hard fought for successes highlight his life of achievement.’
Mine is just one story. I hope as awareness for the condition grows more and more stories will be told until ACC is as familiar and understood by the outside world as other conditions like Autism.
Thank you for reading."
Alex
24 c-acc [c-acc=complete agenesis of the corpus callosum]
Would you like to know more about the new e-book titled: KNOWING ALEX: Life with Agenesis of the Corpus Callosum, co-authored by Alex Reisenauer, who has ACC, and his mother, Cindy Mauro Reisenauer?
Well, go ahead and have a look inside the book, where you can view the table of contents as well as read an excerpt.
UPDATE:
If you don't have a Kindle, or other type of e-reader device, but still want to get the e-book and read it--You Can. The e-book is available to read on your computer.
Plus, you can also download other Free Kindle Reading Apps for Kindle Cloud Reader, Smartphones, and Tablets (i.e. iPad & Android Tablet). You don't need to own a Kindle device to read Kindle books.
Wow! I am excited to know that there is a book of this quality, and
in-depth information, available that speaks directly about the diagnosis of ACC, and
makes it incredibly personal, coming from the perspectives and viewpoints of a
mother (and son-who has ACC) team!
Huge congratulations to both of you, Alex and Cindy, on your new book. I can already tell
that this book will speak to so many people who read it....from parents who
have a child with ACC, to teachers/school staff, tutors, to adults who have ACC, to new parents-to-be who are expecting a baby with ACC, as well as doctors and other professionals and more.
As a parent myself of an 18-year-old son, who is completely missing his corpus callosum, (and as someone who is currently reading KNOWING ALEX: Life with Agenesis of the Corpus Callosum, while nodding my head and relating to much of the story), I am certain that this book will be monumental and instrumental in creating a much-needed greater awareness of Agenesis of the Corpus Callosum, a condition that deserves to be better understood and recognized for the sake of the many people who's lives are affected (in a variety of differing ways) on a daily basis.
Kids and school and Agenesis of the Corpus Callosum.
This is a repost because Fall is right around the corner and that means:
Below you will find a list of ACC Educational documents that are available.
I will continue to add any new ACC documents that pertain to education to this page so they are all located in one place and easy to find.
If you are aware of a helpful document about ACC and Education please let me know by leaving a comment or sending me an E-mail so that I can add it here.
“Considerations For Educators Of Students With ACC”: Mr. McCallum wrote this document. He is a teacher who taught a child with ACC in his classroom. He offers detailed and valuable information.
If you would like to receive a copy of “Considerations For Educators Of Students With ACC” (sent to you via e-mail), please send me an E-Mail request.
*Note: In your e-mail it is helpful to know if you are a parent or a teacher requesting the information.
Please feel free to also include any specific challenges and areas of concern that your child/student is experiencing.
National Organization for Disorders of the Corpus Callosum "Facts about Agenesis of the Corpus Callosum and other Diagnoses" (NODCC) Printable PDF Brochures: (give one to your child's teacher)
I am incredibly thankful to all of the Moms and Dads who
want to tell their story about being pregnant and having
a baby with Agenesis of the Corpus Callosum.
I received an e-mail last month with the subject line: "ACC Pregnancy Story", that said:
"I would like to share Caleb’s story, although I am a dad, not a mom."
I don't know if you noticed that the title of this story is "ACC & Dads-To-Be", which is a first.
This is the first ACC Pregnancy Story written by a Father and I hope that it will pave the way for other Dads out there who would like to tell their own story about having a baby with ACC.
I am very grateful to be able to include Rodney's ACC Pregnancy Story here.
Each story is as unique as each child who has ACC. And this story is uniquely told from a Father's perspective.
I believe in my heart that every story told will ultimately
reach out and touch the life of someone else in
very special ways.
Thank you very much, Rodney. It is wonderful to hear from a Father, and it's an absolute privilege to
be able to post your story here on the ACC blog for others to
read. Thank you for reaching out to other people and for offering hope. I want to extend my heartfelt thanks to you, Rodney, for your willingness
to express your ACC Pregnancy Story in words (and beautiful pictures) and for coming forward as the other half of the pregnancy team, who is just as deeply affected and involved.
Written by Rodney
Caleb’s Story
For the past year, anytime I have thought of my son’s birth, I begin to tear up. It was by far the most wonderful and terrifying experience of my life. The initial shock has finally begun to fade, but the experience has changed my wife and I’s lives forever. We did not discover Caleb’s complete agenesis of the corpus callosum until a few days after he was born and after reading many of your stories about discovering it prenatally, I am very thankful we did not know until after he was born (although I can’t say I felt the same way at that time).
My wife Katie and I originally did not want to have kids. However, we both began to feel the need for something more out of life and decided in our early 30’s to have a child. It took only two weeks of trying and she was pregnant. We couldn’t keep the news from either of our families very long as we were both extremely excited. We took a birthing class and my wife made out a detailed birth plan. Absolutely nothing
went according to her plan. Her labor was long and painful, likely in part due to Caleb being turned face up. My wife’s doctor never showed. Fortunately, we did have a very good nurse with us. A hospital physician showed up at the very end of her labor to deliver Caleb. Caleb was born at 3 in the morning with a head full of hair and a grimacing cry. We immediately noticed his midline cleft lip, but I did not realize it was abnormal at the time. He also had a very broad nose. I cut his umbilical cord and his mom got to hold him for a few moments before a nurse commented that she didn’t like the way he was breathing. She took him to a table on the other side of the room to do his APGAR testing. The doctor assured us not to worry that if the nurses were concerned there would be an entire team of specialists in the room. Moments later, there was an entire team of specialists in the room. I watched our son gasping and fighting for each breath. His color turned from a bluish pink to a purple. When they rushed him to the Neonatal ICU, I got Katie’s mother from the waiting room to stay with her while my mother and I went to ICU.
When we got to ICU there were several nurses and specialists hovering over Caleb, monitoring his breathing, giving him oxygen and waiting for the doctor to arrive. I remembered one thing from our weeks of birthing classes that came in handy. The teacher had once said to the dads that if there was something wrong with your baby, that the dads needed to talk to their babies, that if they couldn’t touch or hold their babies that they needed to talk to them and sing to them while the doctors worked on them. So I talked to him and sang to him. I’m not exactly the type to sing in public, but I sang to him. I sang some Johnny Cash and Jimmy Buffett, not really because I liked the songs, but because I knew the words and it’s what came to mind at the time. I’m not sure what it did for Caleb, but it helped me.
Caleb in hospital after he was born
The neonatal physician arrived who ironically is our neighbor. He had originally told me that he hoped he didn’t see us at the hospital because that meant something was wrong, so I rightly told him I was not glad to see him. After an x-ray, the doctor told me that Caleb had a pneumothorax, which is basically a collapsed lung. He performed a pneumothoracentisis (stuck a needle in his lung) to allow for the air on the outside of the lung to escape. He then put Caleb on a CPAP and Caleb began to breathe much easier. Katie finally made it to ICU at this point. She started to cry seeing him with the CPAP and various monitoring instruments attached to him but I assured her that he was doing much better than he was. We had a hard time leaving him there, but we were told it was shift change and we had to leave. We were all exhausted, but I couldn’t go to sleep not knowing someone I trusted was with him and my mother volunteered to stay with him, which I am eternally grateful for as I know she was exhausted as I was. We returned to our room at mother/baby, where just kind of fell apart. We held each other, cried and fell asleep for a couple of hours.
The next day a geneticist came by to see us and Caleb, which we all thought to be odd, but he explained that it was routine due to Caleb’s cleft lip and that he wasn’t looking for anything in particular. He ordered a series of tests including an echocardiogram of his heart and an ultrasound of his brain and kidneys. Also, an ear, nose and throat specialist came to see us and told us that Caleb had unilateral choanal atresia (a blocked nasal passage) and laryngomalacia. He thought that Caleb would grow out of the laryngomalacia, but that the choanal atresia would likely require surgery at a later date (maybe 6 months). Caleb was off the CPAP by the next day.
At the end of the 2nd day we were evicted from our room on the mother/baby unit, so we started sleeping in an ICU sleep room, which is a closet with a cot. On the fifth day, Caleb graduated to a sleeper room in ICU, where the parent’s have a bed and a couch and get to sleep in the same room with him. We thought we were getting close to being able to leave the hospital at this point. The nurses started talking about taking him in for an MRI. We asked “Why is he getting an MRI?” He already had an ultrasound of the brain, so we thought it was a genuine mistake. A nurse practitioner then told us that Caleb had complete agenesis of the corpus callosum (c-ACC). She explained that she wasn’t really the person to explain it to us, but that he would likely be developmentally delayed and have significant mental deficits. We were crushed again. I think the next 24 hours were the darkest we had ever known. Our child was missing a major part of his brain, what else were we left to think. The next day the geneticist came back and gave us a lot of comforting news. He indicated that Caleb’s cleft lip, broad nose, slightly wide spaced eyes, choanal atresia and ACC were a collective set of symptoms that fit the genetic disorder frontalnasal dysplacia. He indicated that Caleb would more than likely only have some slight developmental delays and/or learning disabilities and that time would tell more. After 7 days in the hospital, we gratefully came home.
Caleb right before we left the hospital
Caleb had surgery to repair his cleft lip at 6 months of age at Scottish Rite in Atlanta, GA. He (and us) had a few miserable days after the surgery, but he recovered very quickly. From a follow up visit with the ENT, he thankfully will not require surgery to fix his nasal passages.
Caleb at 6 months old in hospital for cleft lip repair
He turned one year old in June and to this point has developed as a normal little boy. He started walking just a few weeks ago and has recently started saying the word “car”. He’s just a happy little boy and the light of our lives.
Our Family (Dad-Rodney, Caleb, Mom-Katie)
I would like to add that I am so very thankful that we had good insurance and were able to give him the care he needed when he needed it. There are many in this world that are not as fortunate. I would like to recommend giving to the charity “Operation Smile” at www.operationsmile.org. Operation Smile sends doctors around the world to perform cleft lip/palate repair surgeries and is a charity that is close to our heart for what they do, they change people’s lives.
1 year old Caleb
Rodney
Father of Caleb
August 17, 2012
There are many different stories and outcomes of ACC and Moms/Dads-To-Be.
I welcome every story.
Do you:
Have questions?
Need support?
Want information?
Have encouragement to give?
Do you want to share your own ACC story here?
I hope to continue sharing more of these ACC and Moms/Dads-To-Be
stories out in the open in an effort to inform, encourage,
support and help other moms (and dads) out there who are being
told that their baby in utero has agenesis of the corpus
callosum.
This ACC and Moms/Dads/Parents-To-Be section will always remain open
and available to anyone who would like to tell their story.
We have been a bike riding family since our son, Matthew, who has Agenesis of the Corpus Callosum, was a baby. It's something we all three love to do!
We started taking family bike rides around our neighborhood when our child was about 9 months old. Matthew loved going for bike rides on the back of his daddy's bike in his carrier (with his adorable little bike helmet--personalized with a "Matt Cool Cat" nametag, made by his dad).
We would even load up our bikes and take them with us on vacations.
Since the time Matthew was a baby, we eagerly drove over Mt. Hood during the summer in July (and sometimes in September)--year after year--to a place called Sunriver in Central Oregon, where they have 35 miles of paved bike paths...
surrounded by nature, with beautiful scenic mountains, Lake Aspen, the Deschutes River, and...
deer that wander right in the backyard of the vacation homes we stay at, among many other fun things to do.
But, sadly, after several years, our wonderful family bike rides came to a screeching halt when our child outgrew the baby/little kid bike carrier, and he could no longer fit inside the typical small bike trailers!
Matthew was, however, able to ride a Rifton 3 wheel adaptive trike--at about 7 or 8 years of age, (with close standing supervision from his dad or I), but he was not able to ride a two wheel bike (like some kids, who have ACC, also have challenges with).
We still very much wanted to find a way to have the opportunity to continue our fun ♥ family ♥ bike ride adventures.
So, we went to bike shops (here in town and also in Sunriver) to inquire about larger bike trailers--plus we even tried Matthew in some of the typical bike trailers (that appeared a bit larger), but he was just too big to fit comfortably inside.
The disappointment I felt during one of our Sunriver (no family bike ride) trips, fired up my engine of determination to find a bike trailer for our child that would fit him and our family's needs, allowing us to pedal those bike paths to our 3 heart's content, with one very special big boy sweetheart in tow.
Well, during my motivated "mommy won't give up" (online search) I was ecstatic when I finally discovered a big, beautiful, blue and yellow bike carrier, especially for people who have special needs, made by a company in Ontario, Canada, called Wike!
Our dream of family bike rides was once again actually going to come true!!
The Wike special needs bike trailer (large size only)-- also converts to an optional stroller:
and jogger, (for an additional cost.)
Plus, Wike also sells additional bike trailer accessories to meet the extra needs that some children with special needs might require.
We happened to mention to our son's developmental disabilities case manager one day (when he was younger) during a home visit that we found a Wike special needs bike trailer and at the end of the home visit she surprised our socks off by generously informing us that they had a one-time end of the year funding available and if we would like the Large Special Needs Bike Trailer for Matthew, they would purchase it for him!?!? Wow! We could hardly believe their amazing generosity. We were astonished and super thrilled and very grateful!
Thanks to the county developmental disabilities program, our son (who was about 10 years old at the time) got a brand new Wike Large Special Needs Bike Trailer with the stroller/jogger conversion (which we love). That was over eight years ago. Our son is 18 years old now.
Truth be told -- if the developmental disabilities family support program didn't fund the bike trailer for Matthew, we would have gladly spent the money out of our own pockets just to be able to resume our very special love of family bike riding with our son.
A marvelous feature on the Wike Special Needs Bike Trailer (that is a Godsend for our son, who gets mega-bitten by the dreaded mosquitoes, resulting in numerous big swollen bug bites) is the awesome built-in mosquito net to keep mosquitoes away from your little (or big) sweeties. It definitely works! That positively perfect feature allowed our family to take an evening summer stroll in the (mosquito thick) high desert, enjoying the village shops and music--while keeping our sweet son--who is a mosquito magnet--safe inside his bike trailer the entire time, with no mosquito bites! If there are mosquitoes within a mile of our son, they will find and devour him--but not anymore (when he's inside his Wike bike trailer with the mosquito proof net). *blows a kiss to Wike* This Mama thanks you very much!
Check out the mosquito net video demo:
This summer in July, we once again put the bike trailer in our truck and headed to Sunriver for a mini 4 day vacation.
While relaxing on the back patio of the home we rented, we were treated to the sight of a mother and father Quail with their very quick baby quail chicks all in a row (about 12+ chicks total--hard to count the speedy lil things). Then, while on a "Mama by myself" quiet walk on the path along Lake Aspen, I stopped and admired several tiny baby ducklings upon the water, working hard to swim through the top covering of green algae; their mommy duck nearby, and later on was startled at the sight of a deer grazing just across the road from me--who got spooked and skipped off across the pavement near me, leaving the imprinted sound of horses hooves in my mind. Plus, during my walk I was also completely captured, and caught by surprise, at the breathtaking sight of horses running free across a large, open meadow.
Sunriver Resort surrounded by nature
On this recent Sunriver trip, we discovered that this will most likely be our growing son's last year in the Large Special Needs Bike Trailer, since he's nearing the maximum height and weight capacity limit of 5 feet 4 inches and 125 pounds. How do we know that? Well, because while pushing our son in it, stroller style, (and when we were helping him to get in and out of the bike trailer), it became too easy to tip backwards if our teenage son slightly moved around inside, if you weren't at the back of the carrier, at all times, holding the push handle firmly.
Wike also sells an
Extra Large Special Needs Bike Trailer that will accommodate a person who is up to 150 pounds maximum, with a maximum height of 5 feet 10 inches tall.
Note: the extra large special needs bike trailer does not convert to a stroller or jogger.
What do we love about the Wike Large Special Needs Bike Trailer, besides the obvious?
It converts to a stroller and is very easy to push (even with a big child inside);
The stroller conversion pushes easier than our son's wheelchair;
It also converts to a jogger - though not with the same easy maneuvering/turning as the stroller;
It has a zippered "mosquito" net enclosure to stop our son from getting mosquito bites, (plus also comes with a plastic rain enclosure); and
Our son enjoys riding in it.
A Few Things To Know (from our personal experience and viewpoint):
It is hard on knees/body to tow (up hills) a bigger child who weighs more in the bike trailer;
It can be difficult to physically get a bigger child inside, who isn't able to climb in himself;
We don't trust the plastic bike trailer brake to hold securely.
We Wish:
that Wike would make a stroller/jogger conversion upgrade possible for the Extra Large Special Needs Bike Trailer.
Over the past few years I have seen other families mention the same longing that we experienced in not having a way to include their child with special needs on family bike rides. It's very special to know that there IS a large bike trailer out there made by a wonderful company, Wike, who cares about the different needs of families and who created an incredible special needs bike trailer, allowing very special family bike rides (for the entire family)!
Sunriver Oregon on a bike path stroll along Lake Aspen
Thank you very much Wike in Canada! We love you -- and your special needs bike trailer, too!
Note: please be advised that I did not receive compensation of any kind from Wike (or Sunriver Resort either). This blog post is provided in the hopes that it might bring about awareness (from a family's perspective who have a child with special needs) and it is offered as a possible resource for other families who are searching for a special needs bike trailer, like I once was for our family.
P.S. At the beginning of September we will be eagerly heading back to our new favorite house in Sunriver for more spectacular nature-filled bike rides, picture-taking, wide-eyed deer gazing, picnics on the patio, night star viewing at the Oregon Observatory at Sunriver--a one-of-a-kind facility--located just past Lake Aspen, (a short and easy walk down the road from our rental house), plus leisurely walks along lakeside pathways, swimming at the new Sunriver SHARC indoor/outdoor water park (Matthew's favorite), and for even more family fun -- because this time we are bringing along Matthew's Grandma and Grandpa!
I am incredibly thankful to all of the Moms and Dads who want to tell their story about being pregnant and having a baby with Agenesis of the Corpus Callosum.
Every story is as unique as each child who has ACC.
Just a few days after posting the last ACC Pregnancy Story #14 by Mum Susan in Canberra Australia, I was contacted by Kate, another Mum in Australia, who expressed an interest in sharing her own ACC pregnancy story -- about having ♥ TWINS ♥
In her own words, in an e-mail to me, (shared here with her permission), Kate wrote:
"I have twins and my daughter was diagnosed with ACC at one of our pre-natal scans! Our son is ok.
I have read alot about this and so far haven't found any stories/Information relating to ACC children who have a twin, therefore if possible would like to share my story."
I am thrilled that Kate contacted me and am so very grateful to be able to include Kate's ACC Pregnancy Story here.
I truly believe that every story told will ultimately reach out and touch the life of someone else in very special, very amazing ways.
Kate, thank you very much. It is a privilege and an absolute honor to be able to post your story here on the blog for others to read. I would like to extend my gratitude to you from my heart for your willingness to express your pregnancy story in words (and pictures) and for your desire to reach out to other families and offer hope.
Written by Kate
My story starts with our struggle to get pregnant. After a year of unsuccessful trying my husband and I started IVF. We found that our struggle was due to my having blocked tubes and a ‘balanced translocation’ (chromosome abnormality) which meant that only 2 out of every 16 of my eggs would be genetically sound enough to grow into a baby. We went through a number of IVF (In Vitro Fertilisation) cycles but unfortunately all of my eggs through these cycles were unbalanced and therefore unable to be used. This was the hardest thing that I have had to go through and the most emotionally draining. Knowing that we were not able to use my eggs, made me feel like a bit of a failure and it took me a while to get used to the idea of egg donation. However, at the end of the day, I realised that DNA doesn’t make you a parent, the everlasting love you feel for your child is what makes you a parent. On our first cycle using the donor eggs we found out we were pregnant with twins.
Twins was something we knew was a possibility, but after such a hard road in trying to have a baby to hear we were having two babies was just amazing. The first 5 months of the pregnancy were great, no morning sickness and I was feeling good. At our 20 week scan we found out we were having a boy and a girl, we were so excited and felt so lucky to be having one of each. Unfortunately, the excitement ended there when we were then told that something appeared to be wrong with our little girl. The doctor told us that he could not see her corpus callosum on the scan. He advised us that it seemed that she had complete agenesis of the corpus callosum (ACC). He explained that there were a number of different outcomes that we could face, ranging from this being an isolated abnormality and our daughter being mostly fine, right through to severe retardation resulting from a number of potentially associated syndromes of ACC. My heart sank and all I could do was cry and think about my little girl’s future. Thankfully our son seemed to be okay from the scan. It’s every expectant parent’s worst nightmare to hear that something could be wrong with their child. The doctor gave us the option to terminate, but to us that was definately not an option for a number of reasons. For one, she was a twin and if we were to terminate her, that would potentially endanger the life of her twin brother as well. Secondly, how could we possibly terminate a child based on the unknown, when from the scan she seemed to be developing normally with two arms and two legs and normal head size, seeming to not look like she had any other syndromes. There was no way we could terminate when we just had no idea how she would be.
The doctor sent us away with a referral for a fetal MRI and told us not to google any information on ACC as a lot of the information out there painted some of the worst case scenarios. My husband works in the medical profession and therefore was able to google for me and put it into context, pulling out the useful information so that I could get my head around what we could be facing. The best way he could describe it from what he read was that our daughter was missing the “main super-highway of nerves” between the left and right side of her brain, meaning for her to get communication from left to right brain and vice versa, she would need to use the slower “backstreet” nerve connections. Using these slower “backstreet” nerves instead of having a “super-highway”, it may take her a little longer for her to undertake actions requiring left and right brain conduction, but she will get there in the end. Everything else we read lead to the unknown of “maybe’s” and that was the hardest part.
At 22 weeks we went for the fetal MRI and that confirmed the diagnosis. Although we knew what the results would show, hearing it confirmed was heartbreaking and reaffirmed the potential challenges ahead. The fetal MRI also showed that our daughter had enlarged cerebral ventricles (ventriculomegaly) which in a normal brain can be bad and a sign of hydrocephalus, more cause for worry on my part. However, having my husband understand everything being told to us and being able to explain it to me in a way I would understand was comforting. We had another fetal MRI at 33 weeks and a number of other doctor appointments and scans to keep an eye on her progress.
At 36 weeks Noah & Tahlia were born, I was nervous and excited. On the one hand I wanted for them to be born so I could meet them and see how Tahlia was, but on the other hand I wanted to keep her inside where I could protect her. So many things running through my head, but I had nothing to be nervous about, they were perfect, everything we could have wished for. Tahlia did not have any problems after being born as a result of having ACC. She scored a 9/10 on her Apgar tests, and passed her hearing test on day 4.
Tahlia & Noah soon after birth (Tahlia is at the back of the photo)
2 Days Old (Noah in Blue, Tahlia in Purple)
When Tahlia was 2 days old, she was taken for an ultrasound of her head and what we originally saw in the MRI of ventriculomegaly, turned out to be a perfectly acceptable result because of the increased space in a brain with the absence of the corpus callosum. She and Noah stayed in hospital for 2 weeks due to the fact that they were preemies. At the beginning they were both tube fed as they were born early. Once we managed to get them onto all suck feeds (some breast, some bottle) and they received the all clear from the paediatrician we were able to bring our little bundles home.
Since birth, we have been observing Tahlia’s growth and progress. Our expectations have been quite broad because of the “unknown” factor you get from everything you read on ACC. We have had regular paediatric specialist reviews, including a paediatric neurologist, as well as initial and ongoing assessments from occupational therapists and physiotherapists, recommended to us because the impact of ACC on developmental milestones.
Noah and Tahlia sitting by themselves at 7 months
Now 2 weeks away from their 1st birthday, Tahlia is doing great and we couldn’t ask for anything more. She has met all her milestones so far and has only been within 2-4 weeks of her brother. She is crawling, cruising, talking (as much as a 12 month old talks anyway), and has just started standing by herself. The look she gets on her face when she has done something by herself just melts your heart. She is so proud of herself and so are we. She has adjusted to finger food well and has loved everything we have given her. She is able to pick up toys with no trouble and passes them from hand to hand well. All in all, she is doing everything a normal 12 month old should be. We are so lucky and grateful that she is doing so well, as we know that things could have turned out differently.
Tahlia at 11 months standing by herself
We are not sure whether having a twin brother has helped Tahlia anymore then if she wasn’t a twin, but we feel having a twin brother has been a blessing for her. She looks at Noah and whenever he does something you can see the concentration in her face thinking “I want to do that too”. She watches everything he does and when he does something new it normally doesn’t take too long before she is trying it too. Having a twin brother is probably the best therapy Tahlia can have at the moment. Having Noah there as a “control” has been helpful for us too. However, I must admit that there are times when Tahlia will do something differently than Noah, for example pushing her bottle out of her mouth rather then pulling it in to drink, and I’ll think “Is she doing this because of the ACC?” But then I think that’s just me over thinking things, all babies are different. As well, there are slight differences in development between boys and girls. Seeing Tahlia start to interact with Noah and play games with him is so nice to watch. To us she is just as normal as her brother and if we didn’t know about the ACC, you wouldn’t think that anything was wrong with her.
9 Months Old
Partners in Crime
Tahlia continues to see a physio once a month, not because anything is wrong but so we are able to stay on top of her progress. Every time we go to see the physio she gives us new things to try for Tahlia and to her surprise Tahlia is already doing a lot of those things. Both the physio and doctors are really happy with how she is going. Having said that we know that just because she is doing well now, doesn’t mean she won’t need a bit of extra attention in the future. But for the time being we are taking things one day at a time and just enjoying our twins and watching them grow.
All of these stories gave me hope when Tahlia was first diagnosed, so I hope my story is able to do the same for other families facing similar situations. I want to finish my story with this quote. Any parent that has a child with a disability or health issues will understand how true this is...
“Children with disabilities are like butterflies with a broken wing. They are just as beautiful as all others but they just need a little help to spread their wings."
Kate
Mum of Tahlia and Noah (twins)
Gold Coast in Queensland, Australia
11 July 2012
If you would like to get in touch with Kate, you can contact her through e-mail:
kate.raftery@hotmail.com
There are many different stories and outcomes of ACC and Moms-To-Be.
I welcome every story.
Do you:
Have questions?
Need support?
Want information?
Have encouragement to give?
Do you want to share your own ACC story here?
I hope to continue sharing more of these ACC and Moms-To-Be
stories out in the open in an effort to inform, encourage,
support and help other moms (and dads) out there who are being
told that their baby in utero has agenesis of the corpus
callosum.
This ACC and Moms-To-Be section will always remain open
and available to anyone who would like to tell their story.
I am incredibly thankful to all of the Moms and Dads who
want to tell their story about being pregnant and having
a baby with Agenesis of the Corpus Callosum.
Each story is as unique as each child who has ACC.
Out of the blue I was surprisingly contacted by Susan in Canberra Australia, Mum of an adorable baby girl, who expressed a desire to share her own story. I was quite eager to get in touch with Susan, and it has been a pleasure to exchange e-mails with her.
I am very grateful to be able to include Susan's ACC
Pregnancy Story here.
I believe that every story told will ultimately
reach out and touch the life of someone else in
very special ways.
Thank you very much, Susan. It is truly a privilege to
be able to post your story here on the blog for others to
read. I want to give thanks to you from my heart for your willingness
to express your story in words and pictures and for your determined desire to reach out to others and offer hope.
Written by Susan
Layla’s Story
I've been meaning to post my experience for a while, given that many of the posts on this website helped me through a particularly difficult time last year when my growing baby was identified as having ACC (agenesis of the corpus callosum) at her 20 week scan in utero.
At first the doctors couldn't explain properly what this meant. We were referred to specialists; I had an MRI of my baby in utero and we underwent a plethora of testing, much of which is a blur to me now. At first my husband and I weren't too worried - we tried to brush it off as a mild ‘defect’. But the more the doctors delved and advised, the more frightened we became.
Can you imagine the fear of an expectant mother who is told that the nature of her child is uncertain? That, if other associated syndromes were identified, then we would be strongly advised to abort the child. The child would certainly have little quality of life and we the parents would become full-time carers for the remainder of our lives. Terminate - at 30 + weeks by this stage - all the while my baby growing and kicking inside me, forming a close bond. How could a parent make such a decision? I recall lying in the bath night after night crying, depressed at the thought of the unknown.
Thankfully, miraculously, testing showed no associated syndromes. This was apparently a very rare occurrence, but one that I was thankful for nonetheless. Still, our doctor explained that even in an isolated case of ACC the outcomes would be unknown. There was simply no way to predict how affected the child would be. She could be only very mildly affected or she could be severely retarded. That said, the chances of mild symptoms were more likely in isolated ACC.
All the while, fluid was building up on the baby’s brain. At 37 weeks my doctor delivered my beautiful baby girl, Layla, via C-section, allowing the opportunity to take action on the fluid build-up if necessary. But even on the way into C-section surgery, my doctor warned that my baby could still die. My doctor proceeded to tell me that babies with significant health problems always had an increased chance of dying soon after birth – it was “nature’s way”. My C-section was thus very stressful, as I remember, and I am certain that I suffered post-traumatic stress or depression or whatever one will label it as a result of this entire ordeal.
However, Layla was born perfect. She remained in a humidicrib for several days and was whisked away for further head scans and testing.
Layla soon after birth
Mum and Layla still in hospital 10 days later
We subsequently measured her head circumference twice weekly, then weekly, then monthly, then quarterly. We travelled to Sydney Children’s’ Hospital numerous times consulting neurosurgeons, paediatric neurologists and geneticists. Thankfully, Layla has never needed a shunt or any other surgical intervention to this point. The fluid on her brain has stabilised, as has her head growth.
3 week old Layla with her big sister
Fast forward one year (she turned 12 months last week) - Layla is a beautiful, delightful little girl, behind on her milestones and slightly out of proportion (her head bigger than her body), but very bright and engaging. She has just started sitting up but cannot yet crawl. She has started to babble and make certain sounds, but still cannot pronounce one single word. She still eats only coarsely mashed foods and hasn't yet mastered finger foods. However, she is reasonably dexterous and explores toys with both hands.
Layla at 9 months
Mentally and intelligently she seems fine so far. She responds to 'jokes' - i.e. peek-a-boo, tickling, teasing, etc. And gives appropriate reactions to specific situations. She is intensely interested in her older sister (2 & 1/2 yrs) and becomes frustrated at not being able to follow her around the house.
We have been very well supported with early intervention services. Layla has physio, and occupational and speech therapy, suitable for her age.
We are under no illusion that all will be plain sailing in the future. My husband and I are constantly on guard, always looking for signs of autistic tendencies, providing early intervention as necessary, and exposing her to a range of experiences to bring her along as lovingly as possible.
We've always said that she doesn't need to be a rocket scientist. As long as she knows right from wrong and is an honest, loving person she will make us very proud.
I really wish that this article gives hope to someone out there who is dealing in relative silence with similar issues. Our hearts are with all parents dealing with difficult health issues with their children. But know that you are not alone; that these issues are perhaps more common than we might think; and that there is always a positive in every negative.
Side note: As an afterthought, perhaps it is worth sharing some of Layla’s other health issues for the benefit of other ACC families. Similar to Mum Michelle
(Pregnancy Story #12), my daughter Layla was diagnosed with an enlarged left kidney in utero. For us, this was at the 28 week scan - the same scan that confirmed Layla’s suspected ACC and identified for the first time her enlarged ventricles. At that time, the doctors could not say what exactly was wrong with the kidney. However, they tried to allay our concerns by suggesting that the kidney issue was secondary to the more immediate fluid build-up issue. Post birth, Layla’s renal scans showed a slightly deformed left kidney, which increased her risk of urinary tract infections. To manage this risk, Layla has been taking low-dose antibiotics daily since birth. However, in the last six months, further kidney scans have showed the appearance of small crystal-like stones (the doctors won’t describe them exactly as kidney stones). Needless to say, this is more cause for concern for us, and it is something that we (with doctors) are continuing to monitor.
Also post birth, Layla was diagnosed with a heart murmur, which the doctors suggest is not serious and is most likely something she will grow out of. She was also born with stridor, or a partially collapsed or ‘floppy’ airway. Again, the doctors suggest that she will grow out of this as the airway grows and hardens over time. Nevertheless, the initial gurgling noises that Layla made as she breathed scared me to the point where I couldn’t sleep and I was checking her breathing every 10 to 30 minutes. But, since birth, her breathing has improved and I am oblivious to it now until another Mum comments to me that, “Oh, she has a nasty cold, doesn’t she?”. I reply, “Oh no, that’s just normal”.
Although it was never diagnosed, I am sure that Layla suffered reflux as an infant. She would scream and cry often (more than an average infant), and I would find it hard to console her. I ended up trying various non-prescription medicine, some of which did help to ease her discomfort. Coupled with that, Layla has suffered constipation since about 3 months old. Again, we are using non-prescription medicine to manage this.
I hope that this helps other parents, as other stories on this website have helped me to make better sense of Layla’s range of health issues.
Susan
Canberra
Australia
28 June 2012
If you read Layla's Story and would like to get in touch with Susan, Layla's Mum, you can contact her through e-mail: susan.moore@3st.com.au
There are many different stories and outcomes of ACC and Moms-To-Be.
I welcome every story.
Do you:
Have questions?
Need support?
Want information?
Have encouragement to give?
Do you want to share your own ACC story here?
I hope to continue sharing more of these ACC and Moms-To-Be
stories out in the open in an effort to inform, encourage,
support and help other moms (and dads) out there who are being
told that their baby in utero has agenesis of the corpus
callosum.
This ACC and Moms-To-Be section will always remain open
and available to anyone who would like to tell their story.
We contemplated getting an iPad for our son, Matthew, who has agenesis of the corpus callosum.
I knew that if we got an iPad for him, we would also need to have a protective case--one that would meet his needs. So....I spent lots of time researching all kinds -- from simple to more elaborate cases for the iPad and I read lots of other parent's reviews (who have a child with special needs). I had a few choices in mind, for my son, that I liked.
In the meantime, we decided to borrow an iPad for our son BEFORE making the decision to buy.
When Matthew was in public school, I became aware that, in Oregon, we have access to a place called OTAP (Oregon Technology Access Program).
OTAP is located in Roseburg, Oregon and they have a Loan Library that offers a variety of technology equipment from speech-communication devices, to adaptive toys, to a variety of miscellaneous items.
Now here's the cool part. You can borrow equipment from OTAP for one month for free to try it in your home! Yes, it's true and it's fantastic!
I do want to add that some expensive items you borrow (for example: some communication devices) may require you to take out insurance when sending them back. So please be sure to ask before you borrow something on loan so you know, upfront ahead of time, about any costs you might incur due to insuring an item for it's return back to OTAP.
"OTAP services are available to anyone concerned with the needs of Oregon's children with disabilities from birth to age twenty-one."
OTAP has an iPad (Item #256) in their lending library so we eagerly filled out the form and were on our way to borrowing it for Matthew!
When the iPad arrived, we discovered that it came housed inside (one of the cases that I had been researching) the iAdapter case!
I was instantly sold!
It [the iAdapter 2 case] was exactly what we were looking for in a protective case for our son, to meet his needs.
Plus, the iPad that we borrowed from OTAP came fully loaded with many educational apps and speech-communication apps (like Proloquo2Go, and TouchChat and others) to try.
After our free one month trial of the iPad with our son, we made the decision to go ahead and purchase an iPad2 AND the iAdapter 2 case.
iPad + iAdapter case = a perfect match We purchased the iAdapter 2 case directly from AMDI (Advanced Multimedia Devices, Inc.). We paid $265.00. We love the iAdapter2 for the iPad2. They also make an iAdapter for the original iPad.
What we especially love about the iAdapter is: 1.It has built-in speakers so it amplifies the sound/volume of the iPad2, making it easier to hear when you are out in public, in a noisy restaurant or other loud environment, (or for a child in a school classroom or lunchroom, etc.)
2.It has a slide switch that covers up the 'home' button on the iPad blocking the child/user from continually pushing it and leaving the program they are working on. 3.It has a great carry handle (easy to pick up and carry around)
Did I mention that we ♥ it? ;)
For more information and a visual view of the iAdapter, watch the video below:
*Note: please be advised the video is from a different company in the United Kingdom (and is not AMDI)
Matthew's new case manager through Brokerage (a service that supports adults with developmental disabilties) was at our home last week for a home meeting with us and when she saw Matthew using his iPad, she eagerly explored the iAdapter case and said she really liked it. I told her that I would send her more information about it through e-mail, which I did. She informed me that she has several people who could use the iAdapter case for the iPad.
I thought that because we love the iAdapter for Matthew's iPad2, and it instantly caught the eye of his case manager who really likes it, I would share it here with anyone who might want to explore it more.
And, if you know about (or have borrowed from) a lending library in your state, please consider sharing that information here by leaving a comment (or send me an
e-mail) because it could help someone else become aware of a very valuable resource. Thank you very much.
*Note: After we purchased the iPad2 for our son, I found AVPlayerHD, a great app that allows me to easily upload and convert videotapes of his music therapy sessions (from my camera) to his iPad2!
What protective case do you use for your child's iPad?
The corpus callosum is the largest commissural pathway in the brain consisting of over 200 million nerve fibers. It allows for communication between the right and left hemispheres of the brain. The corpus callosum is the largest single structure in the brain. Agenesis=Absence or incomplete development of an organ or body part.
I am blessed to have the opportunity to be a stay-at-home mom and I homeschool my child, Matthew. Matthew was born with Agenesis of the Corpus Callosum (ACC). The corpus callosum is the middle section of the brain...and it connects the two hemispheres of the brain and allows for communication between the two sides of the brain.
WELCOME
