Meet Katie – Stroke at 4 Months
Katie had an ischemic stroke at the age of four months which left her with right hemiparesis and unable to feed or vocalize. Today at 2 years, 5 months she no longer needs a feeding tube or special diet, walks without assistance, uses her right hand spontaneously, and says and signs several words.
Katie’s mom Crystal shares the journey so far and what she considers to be key factors in helping Katie get to where she is today.
Katie is the Indomitable Purple Lightning. Showing strong resilience and adaptability in the face of adversity with joy and humility in her heart. The image of the brain, surrounded by electric lightning on her chest shows the never-ending rewiring of her brain which finds a new way to surmount any of the losses dealt her by her nemesis: Pediatric Stroke. The electric lightning both powers and reforges her daily perseverance to tackle any obstacles in her path. Her gold costume forges new paths, shows off her amazing fashion sense, and demonstrates her insistence at being up front and noticed. With her support team behind her, there is nothing the Indomitable Purple Lightning can’t handle.
Early identification, early Intervention. Know the risk of stroke, know the signs of stroke, have a plan for stroke. Katie had several advantages. First, although it was a major stroke, it was caught early. Katie was born with a major and rare heart defect that was not discovered until her 3 week well baby checkup. She was immediately referred to pediatric cardiology who admitted her directly to the PICU. She was in advanced heart failure and on a ventilator. She was transferred to a specialty hospital and had her first open heart surgery procedures at six weeks old. At four months, she was still in the hospital. The repair had failed, so a second open heart surgery was performed in which her doctors installed a mechanical heart valve. Katie was now on blood thinners but the IV for these drugs was accidentally interrupted for a few hours. She was then at high risk for a clot to find its way to her brain and cause a stroke.
Figure out what has changed, keep track, target your interventions and therapy. Katie had the stroke a few hours after this IV interruption while nursing. I recognized it immediately. Her eyes rolled back, she seized briefly and let out a painful cry. I immediately called for a nurse and told them I thought she was having a stroke. The medical team was there in minutes, and she was in an MRI machine within the half hour. By the time we got back to the room, a neurosurgeon at another hospital had seen the images and was being consulted. Neurology was waiting for us at bedside. By now Katie had been in the hospital for several months and everyone on staff were familiar with her condition. So, we were fortunate that everyone recognized the signs of stroke, and she was treated soon after that.
A second thing in Katie’s favor — she had been in the hospital for months prior to her stroke so she had actually begun working with therapists for feeding, OT, PT, and music therapy. The therapists knew what she was capable of and were able to accurately assess what had been lost. So, Katie was able to get targeted therapy soon after her stroke.
When Katie was finally released from the hospital, she had been there for 8 months. She had spent most of that time very ill. Her movement had been very restricted. She was intubated, in restraints, heavily sedated, with lines and tubes everywhere, she was in pain. Her development was on hold. But she was indomitable!
Therapy, therapy, therapy all kinds, all the time. A third advantage, Katie has continued to have access to an excellent PT and OT team, including feeding therapy both while inpatient at Children’s Hospital Los Angeles, and then with her team at Therapy West in LA.
At eight months, she had never rolled over, sat up, or crawled. Still, Katie’s physical therapists got her walking on her own before the one-year anniversary of her stroke, at the age of 16 months! Although the stroke left her unable to coordinate sucking, swallowing, and breathing, her feeding therapy allowed her to move on to a regular diet, and she was able to have a smash cake for her first birthday. She then had her feeding tube completely removed just before her second birthday and now requires no special equipment or diet.
Advocate, make yourselves known, call, write, show up, get personal, insist, appreciate, thank, repeat. The fourth advantage for Katie was that she received excellent coordinated care. I have advocated for her at every turn. She receives high quality coordinated services from Kaiser, California State Medi-Cal program for disabled children, the Southern California Regional Center for developmentally disabled children and adults, and she will now also be able to get orthotics through the California Children’s Services.
Currently, Katie participates in nine hours of specialized weekly cognitive therapy in a group setting through Therapy West’s Infant Stimulation Program. Run by SLPs, OTs, and PTs as well as experts in Early Childhood Education, this program gives her a preschool-like experience with peers where her development is frequently assessed, goals are set, and then achieved. TWISSP has also helped her speech and social skills and she LOVES it.
Never let up. Participate in every instant. Celebrate every gain. Finally, there’s Katie. She is the biggest part of her success. Katie is an amazing person. She has taught me that the current moment is all there is. That it is anxiety and fear that make unpleasant things into awful traumatic experiences. But she faces challenges in the moment, holds no grudges, and brings no fear into difficulty.
Katie loves to use and to move her body. She is always in motion. She is always trying new ways to get around and to move. This makes her very effective at PT and at OT. She loves people. She enjoys them. She’s funny, she interacts, she communicates, she cares about others’ feelings. She has personality and spirit for days. I think she sees her therapists and herself as being on a team. She’s a wonderful little girl and I’m so lucky that she’s mine. The Indomitable Purple Lightning — she will find her way!
Written by Crystal, mom to Katie
