A Beautiful Face of Hope
After marrying and blending our families in 2008, my husband Michael and I were eager to have a child together. We were so excited when we found out that I was expecting! Because I was 40 years of age, I was considered “high risk” and underwent a lot of prenatal exams, testing and ultrasounds. Thankfully, everything indicated that we were going to have a healthy baby.
Joscelyn Grace was born via c-section on May 19, 2011. The delivery was uncomplicated. All seemed well until July of 2011 when Joscelyn had her first seizure.
I rushed her to the ER and she was transferred to the local children’s hospital. An EEG was performed and the results were normal. The doctors began looking at Sandifer‘s Syndrome as a possible explanation for her seizure-like episodes. An Upper GI was ordered and showed reflux. We were sent home with a diagnosis of Sandifer’s Syndrome, a prescription for Zantac and orders to follow up with our pediatrician.
Joss continued to seize on and off for several months. We began seeing a gastroenterologist, who prescribed Prevacid in addition to the Zantac in order to stop the reflux that we believed were causing her seizure-like episodes. Sometimes the medicine would appear to work and the seizures would stop for days or even weeks but they always returned. It was heartbreaking to watch our little girl stiffen, ball up and cry out in pain. Her episodes left her exhausted for hours afterwards. She began to fall behind her peers developmentally and by 11 months of age was still not sitting up for more than a minute unattended, was not crawling and wasn’t walking.
On April 28, 2012, Joscelyn had a very bad seizure episode and her lips turned blue for the first time. Even though we’d already had an EEG done and the results were normal, I decided to have her checked out by a neurologist again. This time, the EEG came back “extremely abnormal”. A follow-up MRI showed hemimegalencephaly. Joscelyn’s brain was malformed and was larger on one side than the other. This rare condition often results in epilepsy. Doctors determined that Joss’ seizures were coming from her malformed left hemisphere.
In many cases, epilepsy can be controlled via medication but the seizures that stem from hemimegalencephaly are often intractable and don’t respond well to anti-seizure drugs. In these cases, doctors often recommend a radical surgery called a hemispherectomy: a procedure in which the damaged half of the brain is removed and the connections between the two brain hemispheres are severed. Removing the “bad brain” allows the “good brain” to grow normally and to take over many of the functions of the missing half.
While we have not yet decided to have the doctors perform a hemispherectomy on Joscelyn’s brain, we are in the process of learning more about this procedure and are also researching other treatment options. We welcome your comments, questions and personal stories of any experience you may have had with hemimegalencephaly or hemispherectomy.
Joscelyn’s journey is just beginning.
Update: We have decided to go forward with Joscelyn’s surgery. You can read more about our decision here: Facing the Unthinkable