Dear Lydia,
I am the mom of a child who is completely missing his corpus callosum. He was diagnosed with ACC when he was four months old by a CT scan and then later had an MRI.
My heart goes out to you with the recent news of ACC for your unborn baby that you received. It is shocking and overwhelming!
I assume that you had a level II ultrasound done when the doctor informed you that they think your baby has ACC. Sometimes a fetal MRI is also done before a baby is born.
Please know that a diagnosis of ACC cannot be 100% confirmed until after the baby is born and the baby has either a CT scan or an MRI. An MRI being the preferred method because an MRI is able to show a better picture of the brain (and can also show any other possible brain anomalies in addition to ACC).
An MRI can also help to tell if the corpus callosum is completely missing, partially missing or thin (hypoplasia of the corpus callosum).
I'm not sure if your baby's doctors have told you to wait and see and deal with anything that may come when it happens. Hopefully that is not the case because there are many things that can be done when a baby is born with ACC to help.
There are some parents who are sent home from the hospital after their baby is diagnosed with ACC who are told to just wait and see and that time will tell and no further medical testing is done and the baby is not seen by medical specialists that are very important.
One thing that you can do is to get your baby enrolled in an Early Intervention program if you live in the United States. A baby who has Agenesis of the Corpus Callosum will qualify for Early Intervention based on the diagnosis alone. Early Intervention will evaluate your baby and will provide physical therapy, occupational therapy, speech/feeding therapy and other therapies and services that your baby might need. Early Intervention is typically free and the therapists come into your home to work with the baby/child, depending on the state where you live. You can talk to your baby's pediatrician about getting the baby enrolled in Early Intervention. Many parents who have a baby/child with ACC highly recommend getting the baby enrolled in Early Intervention and therapies as early as possible to help ensure their development. I am one of those parents who highly recommends it and I enrolled my own baby, Matthew, as soon as he was diagnosed with ACC.
For your information, below is a link to a list of medical tests and specialists that are very important when a baby is diagnosed with ACC:
What Should I Do Next?
scenicbeauty.tripod.com/WhatComesNext.htmlIn response to your question about NACD (National Association for Child Development) and places like the IAHP (Institute for Achievement of the Human Potential) as well as Glenn Doman and Brain Gym are mentioned by some parents who have a child with ACC. Some parents report success in using these types of programs with their child, others warn to be careful about seeking a miracle cure for your child and being charged thousands of dollars on a program for your child.
There have been a number of parents in one of the ACC e-mail support groups that I belong to mentioning that they believe the Glenn Doman programs and Brain Gym are helpful.
Activities, exercises and therapies that help to work on midline activities and crossing midline are mentioned to be helpful by parents who have a child with ACC and even by some adults who have ACC.
There is still a 'wait and see' period that parents dread (myself included) when you have a baby who is born with ACC. The reason being that due to the large range of effects that the diagnosis of ACC has....there is no way to tell exactly how or if ACC will affect your baby.
But you can definitely be doing something through Early Intervention programs and therapies, through the medical testing and taking your baby to see necessary specialists to rule out any other possible conditions or problems.
Your fourth baby will also have a wonderful advantage with having three other siblings who will provide so much interaction and stimulation when he is born. The siblings will model and help encourage the baby to learn so many things and will provide a wonderful and loving natural 'therapy' environment.
You can read ACC Pregnancy stories written by moms if interested at the link below:
agenesiscorpuscallosum.blogspot.com/search/label/ACC%20and%20Moms-To-Be If you have ANY questions or concerns about anything please e-mail me anytime. I am happy to help you and share the information that I have learned about ACC while dealing with my own child's journey. My e-mail is:
hope@aracnet.comMy thoughts and my prayers are with you and your family and your very precious baby #4 who will soon be born.
Sandie *Mom to 17 year old Matthew with ACC in Oregon*
I have 3 "normal" children already, ages 6,4,2. Baby #4 is due in a few months. At our ultrasound yesterday they informed us they think the baby has ACC. They could not find any other problems or deformities whatsoever though.
So I've gone from "this is horrible" to "maybe he'll be mostly fine" to "looks like lots of kids like this have issues to deal with."
I don't like the "wait and see" mentality. I want to know what I can do to prepare for this, if indeed he has ACC. I understand that they would do an ultrasound and/or MRI of the baby's brain after he's born, to confirm what exactly is there or not there. I don't want to have the baby be born and then just wait to see how ACC affects him, and then do therapy for that - as in, can a person do pre-emptive home therapy or whatever to help the baby develop as well as possible after birth?
Has anyone had experience with NACD or IAHP (Glenn Doman)? I have most of the Doman books (for other reasons) including his "brain injured child" one. I would like to know what people have done (if anything) before their child has exhibited developmental problems. Or what I should know ahead of time to expect. I've read lots of people's stories online, and I realize every story is different and there are different issues with each. I just don't want to wait around after he's born if there's something I can do to help development along.
Thanks for whatever feedback you can give me!
Lydia