Gayle Brisbane, mother of premature triplets, describes daughter Abby’s fight for her life by overcoming an E-coli infection as a baby in a Neonatal Intensive Care Unit (NICU). “We were kind of sitting around, basically waiting for her to die. I mean here she was, not even two pounds, trying to fight off an infection that has killed adults.” Abby was near death for a full day, with near fatal levels of oxygen saturation, heart rate, blood pressure and temperature. Her tiny body went into septic shock. Doctors and nurses took extreme measures to save her, not expecting her to survive. Somehow, Abby rallied to make a miraculous recovery; however, that was the first of many battles to come.
Abby spent the first five years of her life in Arizona, before moving to her current home in Colorado, where her mom, Gayle, decided to pursue a PhD at the University of Colorado. Prior to that, Gayle was a T.V. sports reporter for 20 years (1995-2015), the last 16 years at FOX10 in Phoenix.
A couple of weeks prior to moving, Gayle and husband Bert noticed Abby was experiencing difficulties and decided to take her to a neurologist. Following her Electroencephalogram (EEG) it was determined Abby was having focal onset seizures. One of the scans showed damage behind her front lobe, which wasn’t surprising to Abby’s parents given she was 15 weeks early, weighed 1lb and 5 ounces, and battled a near fatal E-coli infection as a baby. Abby had the most severe case between sisters Simone and Bella, also in the NICU with Abby for 13 ½ weeks. All 3 babies came home for the first time on heart monitors and oxygen, which made for an even more surreal experience for Gayle and her husband, Bert.
Severity and Frequency
Abby is currently 7 and just finished the first grade. Her seizures began at 5½, and neurologists speculate her growth spurt may have triggered her epilepsy. Abby is developmentally delayed. It is believed both her delay and focal onset seizures stem from brain damage caused by E-coli. Early on, her seizures weren’t too severe, with petite mal symptoms. However, they have progressed to grand mal symptoms and have occurred up to five times in a day. Most of her seizures last from 1-2 minutes. Sometimes she struggles to breathe. Her most severe seizure occurred at school, when she foamed at the mouth and nose. It usually takes 1-2 minutes after a seizure for Abby to stabilize, followed by a couple of hours of sleep.
Precursors and Triggers
Gayle and Bert track the occurrences of Abby’s eating and activities. They’ve not noticed patterns or triggers yet, although, there have been times where Gayle has noticed Abby battling off her seizures. “Abby will freeze in her tracks, and then her head dips down and to the left… and her left hand will sort of go back like she’s bracing herself to fall and she will just stay in that place for five to ten seconds before she goes down.” The instances where her parents notice she fights them off, Abby will go into her seizure routine, but then quickly shakes her head and instantaneously shakes it off.
Perhaps the simplest, yet effective treatment that may have saved Abby’s life occurred in the NICU, when doctors thought she could be taking her last breath at any moment. They recommended Gayle and her husband try Kangaroo Care, where a baby lays on their mother’s bare chest. The skin-to-skin embrace simulates a baby being in a kangaroo pouch. Gayle maintains a few doctors swear by it, and that it’s a reminder to these babies that someone cares about them. Gayle claims the babies know their mother’s scent and touch. Gayle and her husband each performed Kangaroo Care with Abby for about an hour. After they finished, they put Abby back in her incubator, and Gayle says it was the turning point. “Her heart rate started to slow and her blood pressure started to improve. Those two hours were just so emotional…cause, I was just ready for her to go.”
Neurologists keep increasing Abby’s doses of Lamotrigine, but it’s never the answer. Her parents have tried giving her many different seizure medications, but nothing works for long. Her body becomes immune to most medicine and ultimately result in stomachaches. The Cannabidiol (CBD – cannabis oil) patches seem to be the most effective treatment, and Abby’s seizures have noticeably diminished since she started them. Gayle has scaled back her Lamotrigine in conjunction with the CBD, and that’s currently the best combination. Her parents also tried giving Abby CBD drops on her tongue, but that proved too powerful and ultimately caused Abby to have 5 seizures in one day (the day after she was given the drops). They immediately stopped the drops and put her back on the patches.
Abby refers to her seizures as “episodes”. Gayle says Abby sometimes gets confused about when she’s had seizures. When Abby is groggier and finds it harder to get out of bed some mornings, it could mean she has seized in her sleep. Last year Abby had approximately 80 seizures at school and another 40 at home.
Gayle has noticed Abby’s seizures have reduced her confidence and made attending school difficult because it’s hard to make friends and concentrate on learning. Gayle also believes Abby fears losing control of her body in front of her classmates. She has had a hard time expressing her feelings because of her developmental disability and therefore has a tendency to isolate herself from other kids. She is comfortable with adults though, and will at times reach out to another girl in her grade that goes into therapy with her.
Abby struggles some with dexterity and fine motor skills. There are instances where therapists have made things a little easier for her, such as thickening her pencils so they’re easier to grab and control. This is especially helpful since Abby has a tremor, which makes writing difficult. Also, therapists have provided an oversized keyboard to type words via the keyboard versus handwriting.
Abby’s parents have noticed a touch of Obsessive Compulsive Disorder (OCD). For instance, she needs doors shut and doesn’t like things out of place. Gayle believes it’s because there’s a lot she cannot control about her seizures, so she tries to control other aspects of her life.
Hobbies and Interests
Gayle describes Abby as very strong and says she likes to hop around everywhere she goes. “She is a very sweet natured girl, kind, affectionate, appreciative and polite. She always minds her manners in saying: please, thank you, you’re welcome…even more so than her sisters.” Abby loves playing with her Ipad, navigates it well, and plays a lot of educational games. Some of Abby’s other favorites include: building towers with blocks, assembling puzzles, and watching her favorite show, over and over – “Daniel the Tiger’s Neighborhood.” She literally will not watch anything else. Gayle says Abby also loves to read simple books. For outdoor activities, Abby enjoys kicking the soccer ball and likes to throw oversized balls around. She also likes the beach and enjoys playing in the water, but refuses to attempt swimming lessons.
Gayle credits Boulder Valley School District’s support. Because of Abby’s special needs, she has a physical therapist, speech therapist, occupational therapist, psychologist and a program coordinator. Abby has been mainstreamed into a standard classroom setting of about 24 students. Because Abby has fallen during her seizures, the school district has also assigned her a 1-on-1 paraprofessional (Para) at all times. Abby also has a home tutor twice a week, most for math.
Gayle’s mother was a main support for them after the babies came home for the first time, and continued to be through the transition to CO. Gayle credits that support in enabling her to complete the first 2 years of her 4-year PhD program. She started in 2015, and hopes to have her PhD by May of 2019. Unfortunately for Gayle’s family, her mother recently moved to Boise, ID to be closer to Gayle’s 2 brothers and their families.
Bert, Abby’s father, is from Trinidad and Tobago, and doesn’t have family close to home for help. After Gayle’s maternity leave ended, Gayle’s husband also took about 1 month off to be with their babies. Gayle credits her husband for jumping in when he could to give her extra time to sleep. He travels frequently for work and does 401K presentations and stock option plans for companies. Gayle says it’s great when he’s home for a week or two. However, there will be 6 week stretches where he’s gone Monday – Friday, and sometimes even parts of weekends.
Abby’s sisters, Bella and Simone are very supportive and protective. They have no lingering complications and can tell that Abby struggles to keep up with them. Her sisters try to include her and all like constant physical contact. Gayle thinks it’s because they were all constantly touching each other while they were in the womb. While identical, Gayle says all 3 have unique personalities.
Last month, the Brisbanes’ got a 2-year-old German Shepard, seizure assistance dog named Bohdi. While unsure if Abby seizes in her sleep, one of the reasons her parents got Bohdi was to make sure Abby is safe if she does. Bohdi is still trying to figure out his role in his new home. Since he is trained to bond to one person at a time, currently he is more bonded to Gayle, since she takes care of him the most. She’s trying to change that by having Abby feed and pet him more. Abby has had 2 seizures since they got him. During the first one, Bohdi didn’t show too much interest, but the 2nd one, he started to show a little more. The trainer assures them the dog understands what’s going on and what he needs to do, and just needs time to acclimate.
Tips and Tricks
Gayle credits her faith in getting her through a lot. She is a preacher’s kid and believes in the power of prayer. She also has a brother who was a missionary doctor in Africa for 20 years. He and his wife lost their firstborn due to a heart defect at the age of 8. They created a very strong prayer chain support network through that difficult time that extended worldwide. In support of Abby, Gayle’s sister-in-law re-engaged her prayer chain involving thousands of people. Gayle says many people she never met feel close to her daughter and still seek updates on the triplets. She also notes having that support has been huge for the family.
Gayle became a mother at age 45, which she believes helps in that she has maturity and has also fulfilled a lot of the bucket list items in her life. A world traveler, she attended and covered major sporting events like the Super Bowl and World Series; climbed Kilimanjaro and Machu Pichu; and visited Africa 5 times. Gayle believes if she had her kids in her 20s or 30s, she would not be handling current challenges as well. Her life is all about her kids and her PhD program.
Like most parents, Gayle and Bert love their kids and are doing their best. Having triplets, and one who has special needs, has more than tripled the average challenges. Gayle explains her ongoing search to improve her daughter’s life. “Abby is such a sweetheart and I love her to death. Part of me being a mom, I want to do everything I can possibly for her… and I have, whether it be getting the CBD, or the dog… and then I get to the point where I don’t know what else to do. Is there anything else I can try to help make her seizures less or less severe? Any kind of support I can get from other people who have been there, done that, would help.”