ACC & Moms-To-Be Story #15 - Twins!

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?

If you do, please E-mail me, (Sandie):
hope@aracnet.com

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
callosum.

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

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.

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?

If you do, please E-mail me, (Sandie):
hope@aracnet.com

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
callosum.

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