My name is Shawn Ploe, and this is my experience in finding out my son had ACC, Agenesis of the Corpus Collosum.
Hell and Heaven - That's what I will say we went through.
Most times people start that statement with Heaven first. but for this story it wasn't like that.
So to begin, I have type 2 diabetes, and have been since 2003. With my sugars being under control the doctors didnt have a problem with me being pregnant. They just wanted me to watch them carefully, which we did. I had the blood sugar numbers of a non-diabetic person for my entire pregnancy. The doctors and nurses made such a huge deal about how proud of me they were. I trudged to that specialty Endocrinologist appointment every 2 weeks with numbers in hand. And they were happy with everything that I was bringing them.
Then about midway through my pregnancy the ultrasounds started. Its so funny, some women (even some of my friends included) only got 1 or maybe 2 ultrasounds their entire pregnancy if they were lucky. They all gawked at me because I had one practically once every 2 weeks from mid pregnancy on. I would bring in my little VHS tape and they would record every little thing we saw. So in a way, I was spoiled. Little did I know that they were doing everything they could to find something wrong. But at this point I was blissfully unaware of that fact.
So my pregnancy went along perfectly, until about the 28th week. I was so happy to be pregnant, considering all the problems we had had trying to get pregnant it was my dream come true. Little did I know I was about to take a roller coaster ride I would never forget!
Around my 25th week they had told me that one of my sons Ventricles in his brain looked bigger than the other one, but that they would watch it, didn't think they needed to be worried at this point, and they blew it off.
Round about my 28th week I had an ultrasound and the Dr told me he believed there was something wrong with my baby boys heart. He sent me to a specialist. I was absolutely petrified. I had yet another ultrasound at the heart specialists office. He looked and looked and looked. and then finally he looked at me and just said, "Breathe". I exhaled, and he said, "His heart is fine. There is a slight murmur. But there is nothing wrong." I was relieved to tears. I sat up and cried my eyes out while my husband finished up with the doctor. We felt as if we had averted some great disaster.
Life returned to normal, and back to my appointments I went. Well 2 short weeks later they again told me that one of his ventricles looked bigger than the other. My brain was screaming here we go again!!!! They had me come back a week later to take a look at it again and this time they wouldn't let it go. For 30 minutes the ultrasound tech continued to scan over the same spot while I laid there and watched my son do back flips in my belly. I was alone for this ultrasound as my husband was working. The ultrasound technician told me she would be back in a minute, she wanted the doctor to have a look. So I laid there for about 10 minutes thinking that I had had about enough of them trying to pick my little bundle of joy apart. Finally, the Dr (I will call him Dr Gottabe, because in his eyes theres just gotta be a problem!) came in and the Technician started telling him where to scan. And then they started arguing over my belly. And by arguing I mean they were in a very heated discussion over top of me, as if I wasn't even there. And they were spitting out all of these very scary scientific terms that I had no comprehension of. I was trying so hard to make a mental note of all of their terms so I could look them up later, but they all ended up a garbled mess in my head. Finally after they were done, Dr Gottabe looked at me and said "Hydrocephalus" and I was like, OK. Can you explain that to me? And he did. I think I took it rather well. But after the heart scare I think I was half ready to scream bull**** at Dr Gottabe! He told me he was sending me for an MRI the next week to confirm the diagnosis. I was thinking, A WEEK!? I have to wait a week?!
So for a week I read up on Hydrocephalus, and cried, this was all my fault, after all. I couldn't even make a kid right (yes I know how silly it sounds now).
But the day finally came for the MRI and I was well armed with my husband, who always knows how to make me feel better about everything. So I had the MRI which might I add is very difficult at 31 weeks. I almost passed out several times for having to lay flat (don't they know pregnant women should not lay flat!?) When the MRI tech was done he helped me up and sent me on my way to put my clothes back on etc etc. As I was going to the dressing area I could see the scans on their screen and I was craning my neck to see what they were looking at, as if I could understand what all the different "slices" meant.... . When I came back through, I asked them what to expect now. And they told me, "Your doctor will have this report in about 10 minutes. Call him." I was so thankful for that little piece of information because I did not want to wait forever for Dr Gottabe to call me, to find out the result!
My husband and I stopped at a Wendy's near the hospital to have a quick lunch. I was immediately on the phone to the Dr Office. and all I was getting was a recording. Over and over again, I started to panic. I finally left a message that was something to the effect of, "I would really really really appreciate a call back today as I do not believe that it will be conducive to my mental health if I have to wait through a whole weekend to get these test results!!!" And there I was crying in the Wendy's. Hell I didn't care what those people thought. I just wanted some sort of resolution.
So my husband and I parted ways, back to work for both of us. I will never forget sitting in my office at my desk when I got the call from Dr. Gottabe. He called me himself, not a nurse, but him.
"Mrs. Ploe? This is Dr Gottabe and I have your test results."
"OK thank you for calling me back I really do appreciate it", I said.
"Well there is good news and bad news. The good news is that it is not Hydrocephalus. The bad news is that it is Agenesis of the Corpus Collosum."
"What does this mean? What is it? and how do you spell that!?", I asked.
"Well it means that the bundle of nerves that connect the right and left sides of the brain is not there. it did not form. Sometimes it can be partial, but in your child's case it is absent all together."
I started to cry, "What does this mean? what are we looking at? Intellectual Disability??" **edit Intellectual Disability is NOT the words I used at the time, but I have since edited this because the words I did use in an emotional state might be found to be offensive to others. I did not use those words to knock anyone, but more out of an emotional concern for my baby**
"Well, that's just the thing, we don't know. We cant tell until he gets here. He could come out perfectly fine, or if he has other syndromes or problems it could be worse. There is no way of knowing", he said to me.
At that point I had gotten my husband on a conference call so he could hear everything as well, and I let him ask the questions because I couldn't hear anything anymore. I was gone. I was twisted inside myself, that's the best way to describe it. I went between searching the Internet for everything I could find, to crying so hard that I felt numb. The Dr. had told me not to worry everything would be fine, and all I could think of was that he was crazy and it must somehow be his fault. He had searched and searched and searched to find something wrong with my kid and he couldn't stop until he did.
I scheduled an appointment with my regular OB hoping to find some sort of solace or maybe even more information. When she walked into the room I just burst into tears, she hugged me and told me she was really sorry that things had gone down the way they had. but that it would be okay. I clearly remember asking her, "Now what?!" She basically said we wait. That I was going to have this baby and then we would see what we needed to do on the other side of that. Somehow she helped me to see that it was what it was. I couldn't do anything about it, so march forward.
For a week I cried I went to work every day, and all I could think about was ACC and my baby. The last month of my pregnancy was sheer torture. I went through the motions but I just wanted it to be over. I wanted things to progress so we could access our situation.
Then, after about a week, I ran across a guy on the Internet named Kyle. Kyle was in his 30's with ACC, and incredibly he had only known about it for 2 or 3 years. I was intrigued. I emailed him and told him my situation. I wasn't sure what i would get back from him, or if he would respond. Imagine my surprise when he did. He told me that he had basically gone into the doctor for stress related headaches thinking their might be something wrong. The Dr. helped him with the stress related headaches and then told him something so profound that it changed his whole life. He had gone his entire life thus far without knowing that he had ACC. And that he should be proud of that. By talking to Kyle he helped me to see that no matter what, not only was my son still going to be my whole world, he was going to be this special unique kid. And that there was lots of support out there and everything would turn out.
So from this point on, I started to relax a bit. The ball in the pit of my stomach started to calm itself and I let go a bit. I think this is about the time I finally looked up to God and said, "This problem is yours, do with it what you will". I also know that we were on many prayer lists. Literally thousands of people had our names in their prayers. This helped a bit more.
Around this point I had gotten uncomfortable, and I was joking with people telling them that I was serving an eviction notice. This baby was getting OUT! Everyone thought that was funny.
So, on February 14th I went in for an amniocentesis. Dr Gottabe said that if the fluid was clear he was ready to be born, if it was cloudy we would have to wait another week. Yipee the fluid was clear! We celebrated at the Cheesecake factory that night with my Brother and his girlfriend (one of my friends). We had a nice Valentine’s Day dinner, and then went home to try to get some sleep. If I had a penny for every time I had to get up in the middle of the night Id be a rich woman!
February 15th I went to the hospital and they prepped me. Ohh boy, what a mess I was for this! And to top it off, my c-section gets bumped for an emergency, so I wait while they do the procedure to someone else, and then re sterilize my procedure room.
I will never forget my son’s birth, I believe it was the most eye opening experience I will ever have. That whole TV scene you see where they just pop the baby out.... NAH that's not how it happens!
They took me into the room where the procedure was going to happen and I'm pretty sure my heart started to skip some beats from nerves. They had me sit on the table while they continued to lay everything out. My mind was going about a million miles a minute. My husband was not allowed to be there for the epidural, umm hello?! Not good for my nerves. So they had me sitting on the table and they told me they were going to do the epidural, and I start to cry. And they were trying to calm me down. and I will never forget the guy that was in front of me because he hugged me. and he patted me on my back and told me "Miss everything is going to be alright." and I thought to myself, ohh dude, if you ONLY knew! He was the kindest most gentlest man, and if I could ever thank him for his compassion it would be a high point in my life.
Back on track - Epidural was in (I think they did a spinal too). All I remember is them telling me it had to go straight down my spine so if I felt it hitting the left or right side of my spinal column i should just say left or right. So the whole time, I yelled, "LEFT LEFT LEFT LEFT LEFT!!!" and the lady kept saying, "I can’t get anymore right!!" I was thinking, I'm doing what you told me to!!
A few minutes later....
Yippee they were pinching my legs and I couldn't feel a thing. But I was still crying, they laid me down and my blood pressure started to quickly drop. And the whole room spun around a bit. Right about that time my husband walked into the room and was wondering what the heck was going on. They finally got my blood pressure straight and, there he was, sitting at my head. This man is my whole life and I am so blessed to have him. But I was still bawling my eyes out with fear. My OB came in and she took one look at me and said, "why are you crying?! do you want the first thing your kid sees to be his mother bawling her eyes out?!" Nice try Doc but that isn't working on me! So they started the procedure. Now I will be the first to tell you that I am not one of these women who thinks that they have to have a baby naturally. Nope! I had to have a fibroid removed when I was younger, and this ensured that I should have a c-section and I was perfectly happy with that! So the c-section suited me just fine, but I was still scared of being awake while they were cutting me open and rooting around inside my body!
So happy joy I didn't feel the incision! and then they started squeezing me like a tube of toothpaste. I mean they were pushing so hard the table was moving. I was like, "Umm this is NOT what I have seen on TV" And everyone in the room just thought that was hysterical. I'm here to tell you that Television has it all wrong! So they started pushing just below my sternum and they squeezed this kid right out of me like you put your toothpaste on your brush. Weirdest experience I ever had.
And then I heard it, my Son’s first cry. And I watched as they took him over to check him out, AP GAR blah blah blah. And the words out of my mouth were, "Is he okay?!" and my husband said, "he is fine hun, why do you ask?" And then came the drugs. As soon as that baby was out of me they were pumping me full of some sort of high octane cocktail. If they had asked I could have told them that I'm a cheap drunk, I'm pretty sure they could have cut whatever it was in half and saved us some money! But dang I was a mess. I started watching the time on the little table they were using to check him out. it had started counting up the minutes since he was born. and somewhere in my drug induced state I realized that I still hadn't held my baby.
The nurses invited my husband over, "Dad, would you like to hold your baby?" My husband looked at me as if to ask if it was okay?! I sort of flipped my hand in some way that must have indicated to go ahead. And then I saw the most beautiful thing ever, the two most handsome guys in my life together for the first time. I could really see my son now. He was this beautiful baby boy. He had this head of dark hair and I fell in love.
Sometime later I remember them rolling me into recovery, and finally after 45 minutes on that little clock on the table, I was able to hold my son for the first time. Yes it was 45 WHOLE minutes before I could hold him!!
Here is where Heaven finally kicked in, for a minute.
It came back later the next day, but only after I was so sick for an entire day from the cocktail that they had pumped into me.
About 4 hours after he was born they took him for the MRI to confirm the ACC Diagnosis. All of that is a blur to me. I remember a geneticist coming in too, and telling us that the only thing that he could find wrong with our son was that his nipples were a couple of millimeters farther apart than most kids. Of course as new parents we were freaking out and asking what this meant. Dr Geneticist smiled at us in that knowing way and said, absolutely nothing! He looks great. RELIEF!
We met the Dr who is our baby's Neurologist for the first time while we were in the hospital. He confirmed the ACC Diagnosis, but also said that he couldn't find any other problems. And that our son looked normal and healthy. To just go with it. Treat him like you'd treat a new born. and then the words that he spoke to me that were so powerful I still get chills when I hear them today is that, "The brain is a very powerful organ." It has the ability to do so many wonderful and amazing things. And that is so true.
Our son is 3 years old now! and he is absolutely perfect in every way. He loves soccer and basketball (really all sports). He has had some slowed speech issues (mostly articulation) but this has allowed us to make some wonderful friends in speech therapists. And they have really helped him come a long way (along with a Frenectomy - he was tongue tied). He is the most outgoing kid, and he has met and exceeded every one of our expectations so far. His Neurologist is in awe of how wonderful he is doing.
I think back to that scary diagnosis and everything we went through, and I know I would do it all over again if it meant I would have my son to hold.
To parents who are going through this right now, please know that there are others who are going through and have been through what you are. Doctors don't always have the right answers, and they certainly don't handle every situation with wonderful tact. But there is information about ACC out there, and it is growing. Find it, arm yourself with everything you can. Join the forums and learn from other folks who are walking this journey with you.
I don't post a bunch on the forums, but I read a lot. I try to reach out if I think I can help. And I am so thankful to have all of these wonderful folks, like Kyle, and Araminta (another Adult with ACC from the forums) who give me hope and inspiration that my kid can live a great full life, despite ACC.