Lillian - Texas

Lillian - Texas

On December 28, 2011, we welcomed our second daughter, Lillian Grace, into the world. She was a beautiful blond haired, blue-eyed baby, and everything was perfect as we took her home on New Year’s Eve. 

At our six-month checkup we learned Lillian was not meeting her developmental milestones. One of those milestones was the size of her head, which was considered to be smaller than normal for her age. A condition we found out is called microcephaly. Our Texas Children’s pediatrician, Dr. Shannon Hayes immediately referred us to a specialist.

On August 29th, 2012, we heard shattering news that changed our lives forever. The right side of our daughter’s brain had not formed correctly, a malformation called “polymicrogyria” which means “too many small folds”. We were told it was likely a genetic condition and went through a battery of genetic tests which all came back normal.
Lillian also would not look over to the left when I talked to her. More tests showed that our daughter had profound left side hearing loss. A second blow of bad news.

Not long after this, Lillian began staring off and twitching on her left side. The third blow quickly came in the form of seizures.

After researching, I learned that a common virus called cytomegalovirus (CMV) could cause both polymicrogyria and hearing loss. Most people have CMV at some point in their life, but if contracted while pregnant CMV can have a devastating impact on your child. Our pediatrician ran a blood test that showed our daughter had a prior CMV infection, which was later confirmed via retrospective newborn dried blood spot testing, performed at the Centers for Disease Control in Atlanta, as a congenital CMV infection present at birth.

A few weeks later I sat down side by side with Dr. Gail Demmler-Harrison, a Texas Children’s Hospital pediatric infectious disease specialist who focuses on congenital CMV infections. “Dr. Gail” as we now call her did something I have never seen a doctor do. She cried right along with us. Our sorrow was her pain as she listened for three hours about Lillian’s medical odyssey. 

She started Lillian on antivirals that week in an effort to stop the CMV infection that was damaging our daughter’s brain and hearing. No one can say for certain, but by getting us started so quickly I believe Dr. Gail saved our daughter from losing her hearing completely. 

Just after Lillian turned 1 year old, we met our Texas Children’s Hospital neurologist, Dr. Gary Clark and he admitted our daughter into the LOVE Unit (Lena’s Observation Venue for Epilepsy) at Texas Children’s Hospital.

After just an hour into her stay, Lillian’s epileptologist, Dr. Michael Quach, came in with his team to tell us more bad news. Our daughter had 25 seizures within the first hour in the LOVE unit. The fourth blow had hit. However, every morning Dr. Quach would come to see us with a positive outlook and say “let’s just take it one day at a time”.
We went home with three new seizure medications, but Lillian’s seizures continued to worsen., By the age of 18 months, Lillian was having as many as 300 seizures a day.

Then the fifth and final blow came. The multidisciplinary neurosurgery team at Texas Children’s told us the only way to save our daughter would be to perform a radical brain operation called a hemispherectomy, a surgery that involves the entire disconnection and partial removal of the right hemisphere of her brain. She would have to live her life with half a brain or risk dying from seizures.

On August 8th, 2013, we handed over our daughter into the care of the Texas Children’s neurosurgery team, led by a brilliant neurosurgeon in cowboy boots, Dr. Daniel Curry. He meticulously disconnected the entire right side of Lillian’s brain and removed parts as well. The surgery took 9 hours and, although the procedure comes with frequent complications, our daughter had none. Dr. Curry even managed to save almost all of her hair! 

Just 10 days after the surgery our daughter crawled across her hospital room, and the twitching and staring spells were gone! I call what happened on surgery day a miracle, but I also know the outcome was due to Texas Children’s Hospital, their world class facility and the teams of specialists who treated Lillian.

Today Lillian continues her recovery at Texas Children’s Hospital as a therapy outpatient (speech and language, occupational, physical, and aquatic). You can see her running the halls there most days of the week. She is meeting milestones and remains seizure free! Now, we can spend every night in our home, as a family, and not in the hospital.

- Shared by her mother, Sandra