Local family copes with child’s epilepsy
When Barbara Ann Cooper was pregnant with her two-year-old daughter, David Emmanuelle, doctors told her things did not look good for the baby. They listed a host of potential diagnoses, from Down’s syndrome to heart disease. Barbara was told it was likely her daughter would be stillborn. But she never gave up. Even when she could feel her child trembling inside her womb, she refused to believe all was lost.
“I knew something was wrong with my pregnancy,” Barbara said. “When she was supposed to start kicking, she didn’t. The doctor told me to tell him when she started kicking. Instead, she started trembling, but he did not believe me. He said every pregnancy is different. Then, he started sending me to a doctor in Houston. Every time I went in there, that doctor told me there was something else wrong with my baby.
“I thought I was going to have a boy, so I was going to name her David, her dad’s name,” Barbara continued with a hint of amusement. “Then, we thought we would have to come up with another name. We went to Barnes & Noble and started looking through books of names. One book said David meant ‘beloved warrior.’ Another said it meant ‘warrior.’ I told David (the baby's father), ‘Well, we may as well keep the name because she’s going to have to be a warrior.’”
Later, she said she settled on the middle name Emmanuelle because it means, “God is with us.”
“I thought, ‘God is going to have to be with her if she is going to make it,’” Barbara related.
After David’s birth, doctors still failed to properly diagnose her condition.
“I noticed something was wrong during the delivery in the operating room,” said Barbara, who had to have an emergency C-section when giving birth to David. “She wasn’t crying at first. Eventually, she did start crying but I did not get to hold her for eight and a half hours.”
Doctors told Barbara her baby was “having some trembles” and was not able to maintain her body temperature on her own. They were keeping her in an incubator. Five days passed and Barbara said she became very concerned because David was losing weight, 14 ounces since her birth. Barbara became frustrated with the hospital staff because they were treating David as though she were anemic rather than investigating further.
“After five days, I was ready to go home and to take my baby home,” Barbara said.
A short time after bringing David home, Barbara said her daughter seemed to be improving. That image was shattered when Barbara bathed David for the first time.
“As soon as I took her out of her bath and laid her on her baby bed, I turned around to get some lotion and a diaper. I turned back around and my baby had foam coming out of her mouth and her eyes were rolling into the back of her head. I had only seen a person have a seizure on TV up until then.”
Barbara rushed her infant daughter to the emergency room where she was treated, but still there was no diagnosis. Weeks went by and finally Barbara found out what had been causing her baby so much trouble.
“David was diagnosed with Dravet syndrome,” she remembered.
According to www.dravet.org and www.dravetfoundation.org, Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy. Dravet spectrum disorders describe a group of related epilepsies having a similar genetic cause. Initial seizures are most often prolonged events and in the second year of life, other seizure types begin to emerge. Individuals with Dravet syndrome face a higher incidence of SDEP (sudden unexplained death in epilepsy) and have associated conditions that also need to be properly treated and managed. Symptoms include behavioral and developmental delays, movement and balance issues, orthopedic conditions, delayed language and speech issues, growth and nutrition issues, sleeping difficulties, chronic infections, sensory integration disorders, and disruptions of the autonomic nervous system, which regulates things such as body temperature and sweating.
Barbara was told David would likely not make it to 2 years old, but she is almost there.
“David turns 2 on Thanksgiving Day this year,” Barbara said. “After seeing all the different types of issues my baby had and how she had to fight, I know nothing but God is sustaining my baby. For her to be 2 on Thanksgiving Day, to me that is a sign He is watching her.”
There is no specific treatment for Dravet syndrome, and symptoms vary from patient to patient. Doctors must be careful when assigning medications because anticonvulsants used to treat other forms of epilepsy could be dangerous for sufferers of Dravet.
“I took David to the emergency room once right after she was diagnosed,” Barbara related. “They wanted to give her medication, but I knew she could not take just any type of medicine for her seizures. I said, ‘No, you can’t give her that.’ They almost called CPS because they said I was refusing treatment for her. I was fumbling for my papers. I finally found the paperwork the doctor gave me about Dravet syndrome and explained that was what she had, so they could not use the same medications they would for some epileptic seizures. They told me they had never heard of it.”
During National Epilepsy Awareness Month, Barbara thought there would be no better time to share her daughter’s story to raise awareness of epilepsy and Dravet syndrome specifically. Research indicates that approximately one in 30,000 infants suffer from Dravet.
“Nobody knows what this is,” Barbara said of the rare condition. “I have videos and a journal to keep track of David day to day. It’s hard, especially because nobody knows about it. Not only that, but there is no one to connect with locally like a support group. I don’t have that familiar support of people who know what I am going through here. I never used Facebook before, but I am the Facebook queen now. All of my help and support come from online communities. I am connecting with people in the Netherlands, Canada, Oklahoma, West Virginia. We don’t have much in common except that our kids have Dravet syndrome. There are just so few cases worldwide. I just want to spread awareness.”
Barbara said this Thanksgiving Day, her family will have a special gathering to celebrate the holiday and David’s miraculous second birthday. Barbara said she has a lot to be thankful for.
“I am so blessed to have David,” Barbara said. “I look at her and I see the face of an angel.”