ACC & Moms-To-Be Story #18

I am very 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.

On October 12th I received an unexpected e-mail from Elizabeth, who graciously informed me that she would like to share her ACC Pregnancy Story.

With her permission I am including Elizabeth's own words, from her e-mail to me, here for you to read:

"I have been an avid reader of this blog for the past 19 weeks, when my son, Nicolas received his prenatal diagnosis of complete ACC. My husband and I were devastated. We didn't even know what the diagnosis meant, never mind how we were supposed to react. We were scared, ashamed, sad... Reading the stories here helped us to shift our focus to hopeful, strong, and optimistic. Here is my story, so that I can pass along the help that I received here when I needed it the most."

Thank you very much, Elizabeth, for reaching out to other people, for offering hope and for sharing from your heart your son, Nicolas' Story, to help others. It is truly a privilege to be able to post your ACC Pregnancy Story here on the ACC blog and I am eternally grateful to you.

Each story is as unique as each child who has ACC.

I believe in my heart that every ACC story told will ultimately reach out and touch the life of someone else in very special and amazing ways.

Written by Elizabeth

Nicolas' Story

Our journey with Nicolas began in January of 2012. When we found out that we were expecting my husband was terrified. He was 44 and I was 39. Along with our advanced age, I have three children from a previous marriage, and he is a born worrier. He came up with so many “what if” scenarios, that I was almost beginning to regret having decided to try and have a baby together. Somehow, I managed to soothe his worries with my stories about how my other children were born perfect, and that the odds of a problem in the pregnancy were so small, that there was really no reason to even think about them.

At 16 weeks, my doctor had me take a very routine blood test – something called a quad screen. I remembered that with my third pregnancy, I had “failed” this very blood test, had a 1/500 chance of having a Down’s syndrome baby, and been utterly terrified. I warned my husband that this test was very inaccurate, and had a lot of false positive results. That didn’t stop either one of us from being sick over the results that we received. One of my scores was 13.5 times the average result. We had a 1/4 chance of a Down’s baby.

We went for an amniocentesis, which thankfully showed 46 evenly matched chromosomal pairs. Doctors still couldn’t explain my very strange result. Due to “advanced maternal age” and this weird blood screening, it was advised that I have level two sonograms throughout the pregnancy, until they could figure out what was going on. Well, if you look too long for something, you eventually find it.

At my 23 week sonogram, my perinatologist, quite cheerfully announced that something looked “weird with his brain”. After some more scans, he told me that the baby had isolated Agenesis of the Corpus Callosum. He said this with a smile, and then told me it was very serious, and sent me off to the genetic counselor.

I had to call my husband, away for two days at work, to tell him this potentially devastating news. We still didn’t know too much about it, except that the range of outcomes was from asymptomatic to seizures and severe developmental delays. All we could do was hope for the best. We had a fetal MRI which was reviewed by a pediatric neurosurgeon. She confirmed the diagnosis. She recommended that we deal with whatever came our way; and to start by going home to paint the nursery. I found this blog, and read about a lot of great kids, some with tougher roads ahead than others, but all loved and cherished by their families. We decided to become one of those families.

Fast forward to September 27. I am 39 weeks pregnant; and being induced. After a relatively easy and uneventful 8 hour labor, Nicolas decided to be born all at once in 15 minutes. Things got very tense, as his heart rate, which had been stable at around 140 bpm dropped abruptly to 60, then into the 50’s. The neonatologists were already in the delivery room due to Nicolas’ prenatal ACC diagnosis. When he was born blue, silent and still, with his umbilical cord wrapped around his neck and tied in a true knot, they were able to revive him within one minute. While his initial Apgar score was 1, his subsequent ones were 7 and 9. Thank God for that prenatal ACC diagnosis, and the advanced preparation of the neonatologists. After about an hour to bond with his dad and me, he was taken to the NICU for further evaluation. He was delivered back to us within two hours, and since has never been out of our sight.

Other than his ACC diagnosis, and some other possibly related, “garden variety” birth defects (heart murmur and undescended testicle) Nicolas is a perfect baby. I know that he is only two weeks old, and that things may change, but so far every specialist assures us that he looks very likely to develop normally, and to lead a very typical life. He has a cardiologist, and a neurologist. On Monday he will meet his Birth to Three [Early Intervention] team. We expect a urologist in the future. We know that we will have many challenges with our child, and that they may not all be easily met, but already we can’t imagine, or even really remember life without him. His siblings adore him; his grandparents are all on cloud nine. He has brought a real sense of joy to our lives and of completion to our family. He has strengthened the already incredible bonds between my children, my husband and myself. We have a tremendous support system and are confident that we can expect the best possible outcome, no matter what comes our way.

Like I said earlier, I know that we are still only in the beginning of this incredible journey with Nicolas. I know that there are people out there that have lived with ACC, or with their children with ACC that have much more firsthand experience than I do. I just want everyone out there who is receiving their prenatal diagnosis, who is scared, and feeling completely alone and lost, to know that in the long run, the ACC probably doesn’t matter as much as you think.

I will always be sad for Nicolas when he has a particularly difficult challenge to face. I will always wish that he had an easier path, and I will always know that this diagnosis is “unfair” and that he didn’t deserve it. However, I will never forget the joy and relief I felt when I first heard his cry. I will never forget the look of rapture on my husband's face when he turned to me to say that Nicolas was holding his finger so tightly at two minutes old. I will never not love this boy with my whole heart for exactly who he is, not what he has or who he can never be. Children know when they are loved, and they thrive because of it.

-Elizabeth
Mom of Nicolas
October 12, 2012

PS:
Attached is a picture of Nicolas "singing", at nine days old :)

UPDATE: November 1, 2012

"Nicolas, at 5 weeks, is focusing on my face, smiling, and "talking". This after he eavesdropped on a conversation with his [Early Intervention] birth-to-three coordinator, where his dad and I both said that our immediate goal was for Nicolas to be able to bond, make connections, and be a happy, socially functioning part of the family!"

"Nicolas was born on September 27 at 5:06 PM. He weighed in at a puny (for my kids!) 7lbs and 1 oz, and he was only 19 (again - puny!) inches long. He was greeted by ecstatic siblings - 2 brothers 9 and 14 - and a sister 11 - who are convinced that he is going to not only thrive, but be a "super-genius" (their words, not mine!)"

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?

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

Want to talk to other moms (and dads) 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/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.

ACC & Moms-To-Be Story #17

I am very 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 from Rossella, a mother who lives in Italy who has a young daughter with ACC.

In her e-mail she wrote:

"I am sharing below my pregnancy experience and these first years with Teresa. I know that there is a group with pregnancy stories, feel free to share my story as well. I would be happy if my story can help or inspire other parents."

The mother, Rossella, is very actively involved in the Italian ACC forum (a wonderful group) that branched out to form a voluntary non-profit organization in 2011 called Associazione Anomalie Corpo Calloso Italia, also found on Facebook, and they just recently held their very first Conference in Italy in September of 2012.

Thank you very much, Rossella, for reaching out to other people and for offering hope. It is wonderful to hear from you all the way from Italy, and it's an absolute privilege to be able to post your story here on the ACC blog for others to read.

Each story is as unique as each child who has ACC.

I believe in my heart that every ACC story told will ultimately reach out and touch the life of someone else in very special and amazing ways.

Written by Rossella

Teresa’s Story

I had a relatively quiet pregnancy. I am a United Nations worker and while expecting Teresa I was serving in Congo (Drc) and then in Haiti. So I was healthy and feeling well most of the time and working almost as usual.

When I was 33 weeks pregnant, I started to have strong contractions. I went to my doctor and for the first time he realized that Teresa’s ventricles (I hope the term in English is right!), were too big and he suspected Hydrocephalus. I immediately came back to Italy and had additional check up which confirmed the Hydrocephalus and a suspected ACC. I went through a Fetal MRI scan and the ACC was confirmed. To this day I am sure that the Hydrocephalus is a consequence of the ACC and that all that liquid just took the empty space of the CC [corpus callosum]. Anyway, I was closely monitored and by week 37 Teresa’s ventricles were 27mm. quite big so they decided to go for a C-section as Teresa needed an emergency surgery.

Teresa was born on November 12th 2009 and after two days she underwent her first surgery. I remember the day of the surgery when she came out of the operating room, she was awake, with her head wrapped in a big bandage, she was not crying, she stayed strong. This was moment when Teresa was born to me as a mother, when I promised her I would always stay strong for her.

I have to admit that those first weeks have been the most difficult moment of my life so far. When Teresa was diagnosed ACC and Hydrocepahlus a few doctors told me that she would be severely handicapped and that she could possibly not even recognize me. One doctor suggested I go to UK for abortion
(I was 8 months pregnant!). This was devastating for me as we were not expecting this and as you can imagine those first few days, both me and my husband, Miguel, went first through denial (maybe they made a mistake) then despair and finally we started to accept it. I remember very well that one day my husband, Miguel, told me:

“Imagine if we have Teresa and she is ok, without ACC and without Hydrocephalus, imagine that one day she has a car accident and she becomes paralysed or worse, what would you do then? Abandon her? Throw her away?. So, we will welcome her, we will love her, she is our daughter and we will take her as she is.”

That is how we have lived so far.

Teresa is almost three years old and she is a cheerful and always smiling little girl.

Since she was three months old we realized that she had some delays. She would not maintain her head up and would only look to her right side. We started therapy, first at home and since she was 6 months at a therapy center. She started to sit on her own at 9 months, walked with support at 18 months and walked alone at 22 months. We had a lot of difficulties with mastication (chewing food) and she first ate a biscuit on her own when she was 20 months old. In the meantime we had another baby, a boy, and I am sure that his presence has helped Teresa tremendously. She picked up her first biscuit when her brother 5 months started himself, she saw him and wanted to try. Now at 34 months she eats on her own both with a spoon and with a fork, she eats everything!

Since she was two she started to attend a kindergarten and the presence of other children have highly benefited her.

Her main difficulties remain in her “social” skills and in the speech. She only says a few words, though she makes herself understood with gestures, and sometimes she gets very frustrated for this. She seeks the company of adults as I am sure she is not able to relate to children and she is not able to communicate with them. When other children take/pull toys from her hands she is not able to defend herself, and also with her brother I have seen now that she reacts after a few minutes, not on the spot.

She likes music, dancing and singing and I have realized that if I want her to do something and she does not get it I have to sing it to her.

She goes slowly in her learning process but I would say steady. I can also say that sometimes she remains stuck for a while and then all of a sudden she makes a big step.

Like for months she was walking with a support and then one day, all of sudden I went to pick her up at therapy and she was walking on her own!

She is a cheerful girl, she is very independent in the house and she can play on her own or also engage the adults to play with her. I leave her some “quiet” time, when she can be on her own without too many inputs (school therapy etc) and we have realized that in these moments she invents her games like all children, she plays with her doll (puts her to bed, or she pretends she is on the phone) she imitates the adults like all children.

I attach a couple of pictures, so you can see her. She is the joy of our life.

2 1/2 year old Teresa

Teresa almost 3 years old

Rossella
Mother of Teresa
Italy

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?

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

Want to talk to other moms (and dads) 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/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.

ACC & Dads-To-Be Pregnancy Story #16

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?

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

Want to talk to other moms (and dads) 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/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.

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.

ACC & Moms-To-Be Story #13

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.

I believe that every story told will ultimately
reach out and touch the life of someone else in
very special ways.

Christina, the mom of an adorable baby girl,
expressed a desire to share her own story.

I am so grateful to be able to include Christina's ACC
Pregnancy Story here.

Thank you very much, Christina. It is truly a privilege to
be able to post your story here on the blog for others to
read. I want to thank you from my heart for your willingness
to express your story in words and for your desire to reach out to help others and offer hope.

"The Story of Our Little Superhero"


I should start by saying this is still very hard for me to write, but I would like other mothers to benefit from my story, as I have benefited from theirs.

My daughter was born on September 2nd 2011 at 7:07pm.

My daughter's pregnancy was completely planned--we wanted to become pregnant by a certain date, or we would wait a while for my husband to finish his schooling. I found out I was pregnant, and we couldn't believe it worked. I had a great pregnancy early on, with the exception of a TON of morning sickness. All I could think about was whether we were having a boy or a girl, how I would decorate the room etc. I took all the precautions--never took a hot bath, took prenatal vitamins, avoided certain foods and started sleeping on my side right away. I had many Moms tell me I was overreacting, but I didn't want anything to go wrong. I had no clue about the uphill battle we were about to face.

At our 20 week ultrasound, we found out we were having a baby girl. We left the ultrasound room, and were told to wait in the lobby. We didn't think much about it, and started texting and calling family and friends to tell them the news. Finally, a nurse came and asked us to follow her to a conference room. Right away, I knew something was wrong. We sat down, and she told us that our baby was "missing part of her brain", and that we would have to "start seeing specialists right away" and that the ultrasound techs "never got anything wrong". I started crying so hard, I was almost screaming. I never met this nurse, and she was telling me the worst news of my life. She even told me "look at me, you're going to be ok"... like she had any idea of what I was going through.

My husband and I sat there and cried and even told the nurse to leave the room. I had so many thoughts going through my mind--would I lose the baby? Why did this happen to me? What does my daughter's future look like? I never felt so horrible in my entire life. The nurse made me feel as if our only option was to terminate the pregnancy, which made me just feel sick and the lowest ever. The nurse took us to see our doctor, in order to answer any questions. While waiting to see my doctor, I heard other babies crying, and I kept thinking "Will I be able to hear my baby cry?" and it made me fall apart. My husband had to put his hands over my ears so I wouldn't hear the other babies. I work at a hospital that serves children with severe mental disabilities. Needless to say, my mind was going crazy. Our doctor was able to explain what was going on in a clearer and more positive manner. She told us the ultrasound machines may have missed her corpus callosum, and that we need to have a follow up appointment with better ultrasound equipment to check us out. She even told us that in her professional experience, she has worked with 1 baby who was diagnosed with ACC and that the baby turned out to be a happy, healthy baby. She explained to us what ACC was, and what we had to do from here on out.

I remember going home, and feeling completely numb. I didn't want to talk to anyone but my husband. We didn't know what to expect, think or feel. We ran through every scenario, and nothing really made me feel better. My doctor told me not to Google anything, and I tried really hard not to. But of course, I did and only found stories detailing the worst case scenarios. I kept clinging to the hope that the ultrasound machine made a mistake, and that we would be told everything would be normal. I didn’t sleep at all that night.

The next day, we met with a perinatologist to do another ultrasound. We found out that he also did not see her corpus callosum, but emphasized that he saw a "little line" that may be her corpus callosum, and that we wont be sure until we get an MRI. The doctor also told us that her ventricles were enlarged, and the MRI would give us exact measurements. I felt like I was hit by a truck, and that everything I planned for was gone. The doctor reassured us and told us that she doesn't look like she has other abnormalities, which is a good sign. He didn't want to do any genetic testing until I had the baby, as it might induce me and set off an early birth. We were to come back to this doctor in six weeks for another follow up.

Although I was extremely sad, anxious and tense, I kept having hope and staying positive by feeling my daughter's kicks. She kicked so much! She would even wake me up at night! Every time I felt her move, I kept telling myself that this was her way of saying "Mommy, I'm OK".

During the rest of the pregnancy, I kept clinging to the hope that our daughter did not have other abnormalities and that if I worked with her, she would be OK. We met with so many specialists--perinatologists, neurologists, neonatologists. I tried everything I could do to learn more. But, like most Moms, I couldn't really find anything.

My husband took a legal internship 2 hours away from me, making things a bit worse. At about 26 weeks, I started noticing my hands swelling. Just to be safe, I had a nurse at my work take my blood pressure and it was pretty high. I called my doctor, and she told me just to go home and relax. Of course, I couldn't. I went home, tried to relax, then went to a grocery store to get my blood pressure checked and it was way, way higher. I called the doctor and I was to go to the emergency room immediately. My sister in-law picked me up, and as much as I didn’t want to be admitted, we were admitted right away.

My husband was able to rush and meet me at the hospital, and luckily everything was fine. I was diagnosed with pregnancy induced hypertension, and from there until I was due, I was to have 3 appointments every week with the perinatologist to monitor my amniotic fluid levels, check the baby's heartbeat and make sure she didn't arrive early. I was also put on bed rest for 5 days.

On top of everything else, I now had high blood pressure. I felt like a failure, like I was not meant to be a Mom. Like this was nature's way of telling me that my body was not meant to have babies. To this day, I still feel like this. I still run every scenario through my mind to try and figure out why this happened--was it the car accident I was in at 10 weeks (doctor says no). Was it because I took too hot of a bath? Did I eat something wrong? This still runs through my head, despite all of my doctor's reassurances.

When I went in for the fetal MRI, I was extremely nervous (and hungry), and was anxious to see the results. When I took the fetal MRI, I was so nervous to see the results. The MRI itself was not as bad as I thought, as I was able to have my husband stay in the room with me, and I had my family there for support.

About 4 days later, we met with our doctor and the MRI showed that my daughter was for sure missing her corpus callosum, and that her ventricles were still enlarged. She was definitely diagnosed with agenesis of the corpus callosum.

I remember hearing this for the first time, and I just cried. I cried, and I was so scared, as I didn't know what any of this meant. I remember hearing a song on the radio about love and heartbreak, and crying hysterically because I wondered whether or not my daughter would ever fall in love, or experience life like a normal girl. The most frustrating part (and continues to this day), is that nobody could tell me exactly what it meant for my daughter. I would have to wait and learn.

Aside from all of the appointments, and constant worry, everything else was going OK. My daughter was presenting feet-down, so we were planning on having a scheduled c-section on September 10th. However, on August 26th I felt somewhat of a tear in my lower abdomen. I thought my water broke, but I was wrong, and later found out it was my daughter turning! We went in for an ultrasound and found out she was head-down. We were now going to have a vaginal birth. This little girl had a mind of her own! My blood pressure continued to rise, so my doctor decided to schedule an induction. After scheduling my induction, my doctor gave me the kindest words a pregnant mother can hear--"You've done your job."

My daughter was born on September 2nd 2011 at 7:07pm, 5 lbs 0oz, 18.8 inches. I was in labor a total of 36 hours. After pushing for 2.5 hours, my daughter arrived with the cord wrapped around her neck and was ghostly white due to lack of oxygen. She was already scheduled for a NICU stay due to her diagnosis, so the nurses and neonatologist were already on hand ready to take her to the NICU. The original plan was that I would be able to hold her for a while, then proceed to the NICU. However, because of the cord, she was quickly shipped away. The first words I heard after she is born is "we have to resuscitate"... I never felt so alert in my life. I was not exhausted, or tired, all I wanted to do was know what was going on. I saw her for a few seconds before she left. My husband quickly followed the NICU doctors and nurses, while my Grama waited with me to get stitched up and recover. The entire time I just remember wanting everything to be over so I could see her. However, the nurses wouldn't let me go to the NICU until I spent 2 hours in recovery.

When I finally saw her, I was devastated. She was attached to a breathing machine, with the mask covering her entire face, and cords attached all over her body. To this day, I can't look at the pictures without crying. However, at the time, I found my inner strength and held it together for my baby. I read to her that night, and slept in my own recovery room while my husband slept in her NICU room (we had our own individual NICU room).

We were in the NICU for a total of 5 days. My husband slept there 2 nights and I slept there 2 nights. We had a system worked out with my mother in-law so that my daughter was never alone in the NICU. I am eternally grateful to my mother in-law for this, as it was really important to us that she was never alone. Although the hospital staff was very nice, I couldn't bear the thought of her having a volunteer hold her, or have a nurse feed her.

Going home was exciting! We were sent home on a BiliBlanket, which made things difficult, but we were happy to be home.

My daughter is currently in the Birth-to-Three program, receiving services for Physical Therapy. At 6 weeks, her motor skills and fine motor skills were only in the 1 percentile. We don't know if this is due to her size (she was born small, and therefore lacked the muscle development), or the ACC.

My daughter is now 7.5 months, and she is doing great! She laughs, smiles and lets you know when she wants her way! I couldn't ask for a more perfect baby. She still receives weekly physical therapy, but so far, has been on par developmentally. She will see a neurologist every 6 months to check her development and to see if any hydrocephalus appears (she had enlarged ventricles in the womb, but have since continued to go down). Some things I have noticed is that she always picks up new skills with her left side first--she then develops the skill on her right side a few weeks later. The neurologist did not have an explanation for this, but said it is no cause for alarm.

Some days, I completely forget that she has ACC. Other days, I can't seem to get it out of my mind. She seems like a "normal" baby now, but I worry that down the line, she will start showing symptoms (as a lot of children with ACC do). I worry that she won't have any friends, or won't be able to do some of the things we did as children. But I’ve learned to not dread on the "what ifs", as I won't be able to enjoy the beautiful baby in front of me.

We also constantly debate whether or not we should tell our daughter, and others, about her diagnosis. What if she turns out "ok", and uses her diagnosis as a crutch? What if she finds out later down the line, and learns to resent us for it? I also hesitate telling others, as I don't want them to treat her differently, or tell me stories of someone they knew with ACC. There are children at my work who are diagnosed with ACC, and for this reason, I won’t tell my coworkers, as I worry they will compare my daughter to these children.

Despite the difficulties, I am thankful that I have such a beautiful, intelligent, amazing little girl. I love her smiles, her cute little toes, her LONG, curly, crazy, dark hair, her beautiful blue eyes. She's going to change the world someday, and I'm going to be there the entire time, cheering her on!

ACC & Moms-To-Be Story #12

I am incredibly thankful to all of the Moms 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.

Michelle, the mom of a 5 1/2 week old baby girl,
contacted me and she expressed a desire to share
her own story.

I got in touch with Michelle through e-mail last week on
a Monday and that same day, within hours, I received her story.

I am so grateful to be able to include Michelle's ACC
Pregnancy Story here.

Thank you very much, Michelle. It is truly a privilege to
be able to post your story here on the blog for others to
read. I want to thank you from my heart for your willingness
to express your story in words and pictures , and for your desire to reach out to help other people and offer hope.

Written by Michelle:


When I sat down to write this, it took me a while to pinpoint where I wanted to start because I think the events in my life leading up to this journey are the reasons why we were able to get through what we have with our heads held high.

I met my husband Craig in high school and we married in 2004. In 2007 we had our first child, (a son), who we named Keegan. Keegan is the sunshine of our lives. He was really a perfect baby!! He was always happy, slept well, ate well and just fit into our lives as if he was always there. We call Keegan our “little old soul”. He has such a huge heart and is always sensitive to what is going on around him. When Keegan was around 1 ½, we had a little “whoopsie” and I found out I was pregnant in October of 2008….this is where this crazy journey begins!!!

Although the pregnancy wasn’t planned, we were all very excited. I always wanted to have my children close together because my brother and I are only 13 months apart and I wanted my children to have a close relationship like we have. 4 weeks after I found out I was pregnant, I started showing signs of miscarriage. We went to the hospital and this is when we had learned that the baby we had already grown to love was no longer with us. It was an awful thing to go through, but it was the first time I had miscarried and I knew how common it was. Since the pregnancy wasn’t planned in the first place, we decided to wait a little longer before trying again.

In 2009 I ended up having 2 more miscarriages so my Dr referred me to a fertility clinic for some in depth testing.

By the time I made it to the fertility clinic I was pregnant for a 4th time and they couldn’t do the tests, so we had to wait and see, but unfortunately we lost this baby too.

I always miscarried around 7-8 weeks.

After 4 miscarriages, I ended up getting pregnant again and the Dr at the fertility clinic had learned that there was an antibody in my blood, specifically called Lupus Anticoagulant. Basically, what this means is that my blood is a little thick and there were tiny clots which was not allowing blood flow to the baby and therefore things weren’t developing and no oxygen was getting through and the baby would die.

I was already about 6 weeks pregnant when the Dr found out about the antibody and a week away from the time I would usually miscarry, so I had to see a thrombosis Dr right away so they could decide what they wanted to do about thinning my blood. I was immediately put on Fragmin Injections (a needle to the tummy every day). I had made it to 8 weeks and then started to miscarry again!!! I was devastated BUT- I now knew what the problem was and would fully be prepared the next time I got pregnant. Unfortunately the Fragmin Injections weren’t started in time. The fertility Dr said to me, “do you know how lucky you are to have a reason why you are miscarrying? Some women never know why.” I knew I was lucky!!

So after 5 miscarriages, in December 2010, I found out I was pregnant again and immediately started Fragmin Injections as well as a daily dose of baby aspirin, progesterone suppositories and a super duper prenatal vitamin. 7 weeks passed, then 8 weeks, then 9 weeks…(that was a huge celebration), 10 weeks etc….

We were finally on our way to having a second baby!!!!!!!! I was referred to a high risk OB and had regular ultra sounds to track the baby’s growth.

At about 20 weeks we learned that we would be having a baby girl!! We were so excited. We had a son and now a daughter….people kept saying we would have a Millionaires Family!!!

Aside from feeling a little sick, the pregnancy was going well. In June I started having spells of vertigo, which apparently was unrelated to the pregnancy, but ended up having me leave work 3 months early.

I went in for a routine ultrasound at 33 weeks which was always followed up by a visit with my Dr. My husband didn’t come as he had been to a 3D ultrasound a few weeks before. This was just a typical visit.

When I was having the ultrasound the technician said she had to discuss one of the images with the Dr and would be right back. 15 minutes passed and I honestly didn’t think anything of it!! She came back and said they needed to do a scan on another machine because the machine she was using couldn’t get the right picture, still didn’t think anything of it…

When I went up to see my Dr, I waited in the exam room for about 30 minutes before he came in. When the door opened and I saw his face, I was very nervous.

He said that some things had shown up on the ultrasound and we needed to do further testing to understand exactly what was going on. He explained that both ventricles were enlarged in the baby’s brain and he thought it was likely something called Hydrocephalus which basically meant that there could be pressure on the brain and that there was a blockage and the fluid wasn’t draining properly and that at birth a shunt might have to be put in. BUT- he could not be sure so I had to have a fetal MRI right away.

2 days later I had a fetal MRI and we were meeting with a neurosurgeon right after to discuss their findings. It was at that moment that our world flipped upside down. They thought it was Hydrocephalus, but it was Complete Agenesis of the Corpus Callosum. The neurosurgeon said that he wasn’t the one to discuss this with and that we should speak with the neurologist so he could tell us what types of obstacles we would be facing and how this would affect our baby but basically said that our child would likely be disabled, have delays and challenges, anywhere from being almost normal to completely disabled, but he couldn’t say either way and that the neurologist would be able to give a better idea of what was ahead.

Then, as if things couldn’t get worse, my OB, by law, had to tell us that if after meeting with the neurologist and we were distraught by the news, we also had an option to terminate our pregnancy. WHAT!!!!!!!!!!!!!!!!!!!!! How bad was this? I could tell it was excruciating for him to tell us about this option, but from a legal standpoint, he had to. Some people only want perfect babies!!

My husband and I went home, we were broken. I was so disturbed that I was even thinking about terminating my pregnancy. After what it took to get here and how far along I was. We couldn’t talk to anyone about it because what if the neurologist said we were having a baby that would be a vegetable and have major health complications…do I really want her to live this way, can we live this way!! My mind was RACING!!! It was terrible. We didn’t even do the IPS screening to check for Down Syndrome and Spin bifida. We always said we could handle that.

Every time I felt my little girl kick, I felt like she was kicking me and saying, you better not get rid of me!!! It’s awful, but it’s true, she was living inside me and I had her life in my hands!!!

The Dr’s said not to Google, but I did anyway. I wasn’t looking for medical reports or Dr’s reports; I was looking for real people who had been through the same thing. This is when I came across this exact website. My husband and I read every single entry and cried the whole way through because we knew there was no way we would be terminating this pregnancy. These children are beautiful and full of hope.

I think it was all so overwhelming. Getting the news about what was wrong with our baby and then topping it off with an option to terminate!!! INSANE!!!

We had made the decision NOT to terminate before we had even met with our neurologist. We ended up meeting with him 2 days later. We were in a much better frame of mind and excited about our daughter again. Our visit with him went amazing. We had a list of questions, were in a better frame of mind to take in information and he was very thorough.

Of course as we all know, this diagnoses is not a cookie cutter diagnoses. You can have two children with two exact same MRIs and two completely different outcomes. The Dr said that based on his experience he would put our daughter on the mild end of spectrum with respect to delays, disabilities etc, with the disclaimer that he can’t be sure. This did relieve us a little and gave us a lot of hope. He said the reason her ventricles were enlarged is because the corpus callosum was missing and that they were basically filling up space.

The best way to explain this diagnosis is like this...

When you travel to the cottage, you take the main highway to get there, but, you can also get there by taking the back roads. So yes, the corpus callosum is the main highway, but the back roads work just fine also.
We finally were able to put this behind us and focus again on the arrival of our daughter. I mean we had already been through so much to get to this point!!

Time passed very slowly, my due date was September 1st. Then September 1st came and I was still waiting. My Dr agreed to induce me when I was a week over (THANK GOD)!!

I was induced the morning of September 8th and at 8:36pm, our beautiful daughter Kaycee Lynne was born. I will never forget the moment they held her up and I saw her face and heard her cry. This will sound superficial, and I don’t mean it to be, but she looked normal and sounded normal!!

The paediatricians were in the room and examined her and weighed her (9lbs 5oz) and I finally got to hold my precious girl. My son Keegan was in the waiting room. We wanted him close by because we knew Kaycee would be spending her first 48 hours in the NICU and Keegan wasn’t allowed in there, so the only way he could see her was if it was in Labour and Delivery.

When Keegan came in to meet his new sister, the first thing he wanted to do was look at her toes!! He couldn’t believe how tiny they were!! We were all in love with her and my husband and I were so in love with our family….we were finally complete.

After 45 min with Kaycee they had to take her to the NICU. I got checked into my new room and Craig wheeled me to the NICU so I could see my baby girl. It was hard to be away from her, but I knew she was where she needed to be.

After 48 hours, I was being discharged and knew that I might have to leave the hospital without Kaycee. This was awful. I couldn’t imagine going home without her. I went to the NICU and the Paediatrician was there and he told me that Kaycee was thriving. Her heart was functioning normal, her breathing and oxygen levels were perfect, she was showing no signs of seizures and she was eating like a champ!! (they actually didn’t have diapers that fit her, they only had newborn diapers and we needed size 1…most babies are premies in the NICU). We were allowed to take our baby home!!!

As we are walking out of the NICU with Kaycee in her car seat, I put my hand on Craig’s arm and stopped him, and I said “This journey is finally over”. After 5 miscarriages, and a crazy ride through my pregnancy, we finally have everything we wanted and more.

As I type this, Kaycee is about 5 ½ weeks old. She is as normal and healthy as a newborn could be. I sort of told her she had big shoes to fill because Keegan was such an awesome baby so I think she has really been trying!! She has been following light and sound since about 2 weeks, started smiling at 3 weeks and cooing at 4 weeks. Her head and neck are very strong. I know this is early, but when I look into her eyes, she is connecting with me, she is so engaged. I feel like Kaycee is going to surprise us all!! We are going to push her to be the best she can be. We had to fight to get her here and we will continue to fight for her for the rest of our lives. She is my little miracle.

My son, my husband, our family and friends were the reason we made it through this! We are so fortunate to be surrounded by such amazing people. We always tried to look at the glass half full and I truly believe in the power of positive thinking!!!

I hope our story helps someone out there the way the other story’s on this website helped me. If it does, take the time to post your story, because it is worth it.

Kaycee and her big brother Keegan

Side note: I also want to mention that in the same ultrasound that showed the enlarged ventricles, the ureter in one of Kaycee’s kidneys was enlarged and we are having some tests done to see if urine is going from the kidney to the bladder then back to the kidney. She is on a prophylactic dose of antibiotics to prevent infection, but the Dr is pretty sure this will correct itself by the time she is 2, and if not, it can be corrected with a very un-invasive surgery. So it wasn’t a huge concern, but worth mentioning.


An UPDATE on Kaycee:

(written by Michelle, Kaycee's Mommy, on 5-13-2013)

"I wanted to send an update to let anyone know that has read our story how little Miss Kaycee is doing.

Basically, there has not been one single concern. She is 19 months old, has exceeded every milestone and she is the most chatty little thing you have ever heard, and keeps her big brother in line.

If I didn't know there was anything “missing” in Kaycee’s brain, I wouldn’t know.

I know that we are truly blessed to be on this end of the spectrum, as some children with the exact same diagnoses as Kaycee are not as fortunate.

By posting this, I am in absolutely no way trying to gloat at how truly blessed we feel, I am simply trying to offer one person a glimmer of hope in what may be their darkest moment. For me personally, finding out everything while pregnant and going through what we did, it was this blog that gave me hope and kept me on the positive side.

I hope this can help just one person!!!

Michelle

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 leave a comment below or you can 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.