Updated: Sep 6
A few months ago, a woman from Boston reached out as she found our website while searching for an organization that worked for Isolated Congenital Asplenia patients. Her daughter was also born without a spleen, and almost died because, like Travis, no one ever detected Grace's missing spleen. In the months since, Tara and I have talked frequently cried together and laughed together; I am beyond honored to call Tara friend. Tara is a powerful ally as she joins our fight to end childhood death from Isolated Congenital Asplenia. Read on to learn more about their family's story, and the amazing superhero Grace.
- TEAM 4 Travis founder Allison
When I read Allison’s story for the first time, I had chills everywhere because it didn’t seem possible. Not just the tragedies she’s endured, and the way she’s allowed her loss to call her to a purpose. Of course that’s amazing. But what struck me in that moment so profoundly was that six months before Travis died, my own daughter had been diagnosed with Isolated Congenital Asplenia in the setting of a life-threatening bacterial infection that had developed into Bacterial Meningitis and Septic Shock.
I’ll try to start at the beginning. My daughter, Grace, was born in 2015. And while she was a wonder in all ways to me, there was nothing to give us any indication that she was, medically speaking, truly rare. I had had a previous pregnancy loss in 2014, and at 37, I was considered “advanced maternal age.” This meant that, during my pregnancy, all the tests were run, and all the procedures were followed. Everything was checked and double-checked. I did all the things. And, for over two years, Grace was healthy.
In February of 2018, when Gracie was 27 months old, she suddenly became ill with what was diagnosed as the flu. The flu was rampant in the winter of 2018 and pediatricians were seeing a lot of it. Grace had a high fever, shakes, lethargy and a headache. After evaluating her on Friday afternoon, the on-call pediatrician said the first day would be the worst. However, over the course of the weekend, Grace didn’t get better and by Sunday night her symptoms began rapidly getting worse. She was desperate for water, but unable to drink any. The doctors we called were reassured that she was still wetting her diapers. Grace was breathing rapidly, weak, and sleeping more and more. When awake she appeared disoriented and confused. She was miserable, and unlike the kid I knew. I had already called the on-call pediatrician several times over the weekend, but called them three more times Sunday night into Monday morning. Each time I was told not to take her to the ER but to wait it out until the clinic opened in the morning. By 6 am, I could not handle waiting any longer, called again and held the phone up to Grace’s face so the doctor could hear her breathing. The doctor agreed to meet me at the office in one hour, before the clinic opened.
Immediately upon arrival at the clinic, the doctor said we should go to the hospital and they would arrange transport. Meaning they would call 911. When the paramedics arrived, one of them used their GPS and determined we’d go to Mass General Hospital, as the other paramedic got Gracie situated. My husband got in our car to follow us there. By the time Grace was set for transport, the paramedic checked the GPS again and, due to traffic, now Boston Children’s Hospital was closer. I texted my husband to let him know, not knowing that the change in destinations would prove to be one of the most fateful decisions of my life.
I believe our story would have a different ending without the doctors we met that day at Boston Children’s Hospital. Somewhere in the midst of the initial tests and blood draws, Grace’s ER doctor made the important decision to start Grace on Ceftriaxone immediately. He treated her infection as meningitis even though, at that moment, we didn’t have results to confirm it and Grace didn’t have the obvious symptoms of meningitis. Meanwhile, another ER doctor told me that although she tries to avoid radiation with children, she just had a “gut feeling” and wanted to run some scans.
As they rushed to do these scans and start treatment, it was determined that Grace would be transferred to the ICU.
However, she was too sick at that moment to make the transfer. Her systems were crashing. I watched as her blood pressure dropped to below 40/30 and the doctors tried various injections to stabilize her. The third injection they gave her finally brought her blood pressure back. She was then stable enough for them to intubate. Again, we lucked out by having a specialist in pediatric intubation on hand that day, and they paged him to do this process with Grace. Eventually we were told that Grace had been intubated and would be transferred to the ICU. We would not be able to see her until they did all of what they needed to do up there. To this day, I still don’t know exactly what went on. They told us we’d have an update in an hour, but it took three before we were updated and allowed back to see her. She had survived the transfer, but was critically ill. We were later told that she was the sickest kid in the ICU that night. We knew that each hour was critical as we sat with her.
Grace made it through the night, but we still didn’t have an explanation for how she had gotten so sick so quickly. We received our answer that morning in the ICU. The doctors reviewed the scans that our ER doctor had just had a “gut instinct” to do and discovered that Gracie was born without a spleen. My first reaction to this news was that they must have been wrong. I had done all the things! I had done all the tests! I would have noticed before then if my baby was missing a body part. But radiology confirmed the absence of a spleen. Grace had been left unprotected from the threat of certain encapsulated bacteria. What can make another child sick, can quickly kill Grace, and it very nearly did.
Grace lived. We had the best possible outcome from her critical illness. But the best possible outcome from getting that sick still has meant years of recovery: physical therapy, speech therapy, and occupational therapy. There were developmental delays due to how sick she had been and there was hypotonia and myopathy. She had to learn to sit up again. She had to learn to eat again. When she initially came out of her eight-day coma it was unclear if she even knew who we were.
She was in pain. She experienced necrosis in her toes and fingers, and underwent an autoamputation process where she lost one toe tip and six fingertips in three months. We just waited for them to fall off and then attended to them. She has since had three corrective surgeries on her fingertips.
Again, this recovery process is a dream compared to what Allison has experienced. But, like Travis, Grace did not need to get this sick. ICA is manageable. It’s scary (especially in a pandemic) but there is a plan.
Grace takes two daily doses of penicillin, which will slow down the onset of any possible infection. When Grace gets a fever over 101 we go to the emergency room. There, they do a CBC and blood cultures and immediately give her a dose of Ceftriaxone. The hope is to have completed all of this within an hour of her having the fever. It’s not a fun protocol, but it’s a life-saving one. And, if we had known she hadn’t had a spleen, or if Allison had known Travis hadn’t had a spleen….their stories would be so different. I didn’t get to know Travis, but I know Allison, and I know how much brighter our world would be if Travis was still in it.
It’s a failing of the universe that kids can and do get this sick. But in the case of Isolated Congenital Asplenia, the infections are preventable. The threat is manageable! We just need to advocate to make the necessary assessments available.
I stood at the precipice of utter despair and the worst kind of loss when Grace got sick. I felt like I had peeked into a room I hadn’t wanted to know was there. Even once we were safely out of the room, part of me remained in it. I felt like I had split into two mothers; the one who still had Grace by her side, and another mother, whose child had not lived. I would wonder about that version of myself, and how she survived. I know in that parallel universe that she could not possibly have survived it with the efficacy, purpose and true grace of Allison.
I already count myself lucky to have Allison as a friend. She feels like family. I could not be more proud and honored than I am to stand beside her and fight.
- Tara Redepenning,
Grace's mom and Asplenia Advocate