Austin's Story: Parent's Letter ProjectAgenesis of the corpus callosum with congenital hydrocephalous – Austin’s mom

I was 19 when I learned I was pregnant. I was beyond scared at the fact that I was having a baby. However, I started to get excited when I had my 20-week sonogram and was told that I was having a boy. The following morning, I got the call that my sonogram was abnormal. After a few heartbreaking doctor visits we ended up having a fetal MRI at Children's National where we finally received a concrete diagnosis of agenesis of the corpus callosum with congenital hydrocephalous. Everyone there was very encouraging but no one could tell me what the quality of life would be for my child. The condition has a broad spectrum of outcomes. They said he could be on life support or go to college. Talk about a broad spectrum. I was terrified.

Austin Shane was born April 11, 2008. It was the happiest day of my life. I had been told that he might not breathe at birth so the sound of his first cry will echo in my head forever. It was the best sound I have ever heard. From this point on, our life has been a bit of a medical roller coaster. Austin received his first shunt at 6- months old. He woke up from surgery with a smile on his face. From there he got a shunt infection and three more shunts. Fortunately, we have been shunt issue free since November 2008! He had to have an ingunial hernia repaired and ear tubes. He also was born with a vascular anomaly on the back of his head that was coming out through his skull causing a hole in his skull roughly the size of a quarter. We had that removed this past week, the day after his third birthday. When we were discharged from the hospital he "high-fived" his nurses and rode his favorite toy, a hobby horse he calls Secretariat from his hospital bed to our car. He is such a joy. I have never seen anyone as brave as he is.

Austin, luckily, is on the upper end of the development spectrum for his condition and he is a normal 3-year-old. The doctors are even surprised at how smart he is. He speaks in full sentences, remembers everything, and can give you directions by pointing to his favorite place, Momom's house. I cannot promise you an outcome like mine, but I will promise you that no matter what your outcome, it is worth it. Every moment is a gift and a blessing. I know that God has looked out for us and that my son has a guardian angel out there somewhere.

My experience has taught me many things that I would like to share with you. First of all, I learned that no one knows my child like I do, not even the doctors. I trust in myself. It is always better to go to the hospital and have it be a false alarm than to not go and have it be something serious. People think I am a little over protective but I just tell them I am a parent. That's what parents do. The worry never goes away but it does get easier as time goes by. People always tell me "You're so strong, I don't know how you got through it." I like to say that you never know how strong you are or what you are capable of until you have no choice but to be strong. If you are in a situation like mine, you will get through. There will be tears and heartache, but one smile from your child makes it all go away. If I can do it, you can too. I was recently told that Austin is expected to be a normal functioning adult. This was the best news I have ever received. I hope that this letter finds you and your children happy and healthy!


Austin's mom

Treatment Team

Invest in future cures for some of life's most devastating diseases

See other ways to give

Share your birthday with a child. Celebrate your life, and give a chance to someone who desperately wants to have as many as you.

Share your birthday with a child. Celebrate your life, and give a chance to someone who desperately wants to have as many as you.Make it happen