Hailey is our beautiful amazing daughter. Her smile is contagious. She is very energetic and is always on the move. She is a smart, strong, fun loving girl who takes on all of life’s obstacles; she doesn’t let anything stand in her way. She amazes me every day with the goals she accomplishes. Hailey has a younger sister named Madison who she loves very much. Madison is Hailey’s little helper she loves her older sister and is always trying to help her with everything. Here is our story…
Unlike most of the Aicardi stories I’ve read, we did not have a very happy pregnancy experience. Well at least not the entire pregnancy, when we first found out we were expecting our first child we were excited and filled with joy we couldn’t wait to become parents, the pregnancy was great up until around 18wks into the pregnancy we went in for a routine ultrasound were we found out we that we were expecting a baby girl, and then during the ultrasound the technician thought she noticed something wrong with the baby’s heart(And this is where our journey began) so we were referred to a specialist to take a second look. We went to see the specialist and she said there was nothing wrong with the heart it was perfect…what a relief (so we thought). She then noticed a sac of fluid in the brain, so once again we were sent to another specialist for another look. It was when we went to the second specialist when we found out our unborn baby girl had a fluid filled cyst(hydrocephalus) and what appeared to be a missing corpus callosum(agenesis of the corpus callosum). An MRI then confirmed it all. The doctor then set up a meeting to discuss this overwhelming news. At the meeting they discussed that they weren’t quite sure on what kind of effect this would have on our baby’s development. And they weren’t sure what the cause of it all was. So the doctor then scheduled an amniocentesis in hopes of finding some more information to an underlying cause to these concerns. Also at the meeting they had us meet with some providers who worked in the hospitals NICU because the likelihood of our baby girl having to require care in the NICU after she was born was quite high, also leading to the decision of having a scheduled cesarean at this hospital (which happened to be 3hrs away from our home). We had the amnio done and waiting for the test results was agonizing. It seemed like eternity. When we finally got them back it came back perfect and confirmed we were definitely expecting a precious baby girl. It was a very hectic pregnancy after that, with being considered high risk because of everything that had happened, there were numerous appointments (ultrasound, non-stress test, checkups…etc.). What was supposed to be one of the most joyful times of our life turned into a very emotional, stressful time, with the constant wonder of how our daughter was going to be affected by it all.
Then finally it was the day of our scheduled cesarean and regardless of everything that we were told to expect we were overwhelmed with joy to finally have our baby girl and to be able to hold her in our arms. The delivery went very smooth with no complications and to everybody’s surprise she did not have to go to the NICU. Right then and there I knew this little girl was going to be a fighter and continue to amaze everybody despite what was wrong with her. She wasn’t going to let anything stand in her way. A few hours after she was born she had an ultrasound on her brain and that’s when the Aicardi Syndrome was confirmed. Hailey was discharged from the hospital with no problems. She was developing right on track, meeting all of the milestones. It was like she was perfectly healthy and that the doctors were wrong, up until she had her first seizure (infantile spasm) when she was about 5 months old. After the seizure’s began her development rapidly slowed down and she started to fall behind. She was having numerous amounts of seizures daily. We immediately scheduled an appointment to see a neurologist. Who then ran many tests on Hailey (EEG, MRI, etc.). It was then confirmed that Hailey was in fact having a type of seizure defined as infantile spasms. We took her for a second opinion just to be sure. Since the seizure diagnosis Hailey has been on a few different medications to try and control her seizures. She tried phenobarbital, Keppra, Zonagran and Topamax. She is currently taking Keppra and Topamax which seem to be working, she is having more seizure free days and when she does have a seizure they are mostly mild, lasting less than 5 minutes. Hailey also experienced “drop” seizures for a short time. Which were the worst they came with absolutely no warning.
Hailey has been enrolled in early intervention and receiving multiple therapies since it all began. She is currently receiving OT, PT, ST and aquatic therapy all once a week for an hour each session. She also has a special education teacher that comes to the house once a week for an hour and works with her as well. She may not talk, feed herself be potty trained or all the things a girl her age does but she is doing very well and she continues to amaze us every day.
Like most moms out there I always found myself asking why? Why my baby? What did I do wrong? With the love and support from my family and friends I’ve learned it wasn’t my fault. Also that god gives you what he knows you can handle and he knew this little girl would hold a special place in my heart. Life may be stressful at times but seeing Hailey happy makes it all worth it. And I know in my heart that with all the love and support she has from her family she will continue to grow and develop and have the best life possible.