Sunday, July 8, 2012

ACC & Moms-To-Be Story #14

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.

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:

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?

If you do, please E-mail me, (Sandie):

Want to talk to other moms who have been there and
understand? Join the ACC Listserv e-mail support group.

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

This ACC and Moms-To-Be section will always remain open
and available to anyone who would like to tell their story.


  1. Thank you Susan for sharing your story. Layla a beautiful girl and it is great to hear she is doing so well.

  2. Thank you for sharing. She looks like a happy little girl and has such beautiful big eyes. I am wondering why she is looking out for autistic tendencies? Are these common with people with ACC? My daughter has P-ACC and has recently had some sensory issues similar to those with Autism. Should I have her tested for autism do you think?

    1. Hi Alison. Sorry I have not replied for a long while. I have just been doing a bit more research myself and it seems that some children with ACC do have traits of ASD. Some are positively diagnosed and I guess this helps parents with additional funding for early intervention. Regarding my Layla, I guess I'm just always on guard, looking out for things like repetitive behaviors, lack of eye contact, high pitched screaming, things like that. So far she's displayed none of these signs, but I still watch how she progresses. I hope your daughter is progressing well too. Thanks for your kind comments. Best wishes, Susan.

  3. Yes, it is quite possible to have a child with ACC and Autism. My 21 month old daughter, who has P-ACC, was just recently diagnosed with ASD. We have kind of always suspected it due to her many sensory processing concerns very early on, as well as, her aggressive behavior problems (hitting, punching, kicking, headbanging, biting herself as well as everyone around her). Many children are diagnosed with Autism before their ACC is discovered. Many of the issues associated with both ACC and Autism are the same or similar. The biggest difference is recognition. Autism has more awareness and more programs for children affected by it. ABA therapy works wonders for both Autism and ACC challenges, however most states only have programs that cover child with Autism for the therapy. We welcomed our daughters diagnosis of Autism, as we now know through much research, she will receive the ABA therapy that she can learn and benefit from and it will be covered under her insurance.


I am very interested in reading your comments and
look forward to hearing from you. Thank you.