My name is Tara Redepenning. I’m a mother, but most days I also feel like a caseworker for my medically-complex child.
In 2018 flu was rampant, and when my two-year-old daughter, Grace, got sick doctors assured us she just had the seasonal flu. Yet she rapidly grew sicker. I spent one full night watching her decline while calling her doctor’s office repeatedly. The doctors gave us interventions I could do from home, but discouraged us from taking her to the ER.
By 6 am and my fourth or fifth phone call, I made the on-call doctor listen to my daughter’s labored breathing. The doctor agreed to meet me at the clinic before they opened for the day. As soon as we arrived, they arranged for transport to take us to a hospital.
Due to a traffic jam, the ambulance GPS re-routed us to Boston Children’s Hospital where my daughter was diagnosed with Bacterial Meningitis and Septic Shock. We had an amazing team of doctors and nurses. One doctor ordered diagnostic imaging because she had a gut instinct that something else might be wrong.
The team at the hospital saved my daughter’s life and made an important discovery. She had been born without a spleen—a rare condition called Isolated Congenital Asplenia (ICA). Since the spleen is essential to filter bacteria out of the blood stream, its absence left her susceptible to deadly bacteria.
I learned that spleens are not checked for in prenatal ultrasounds. Her spleen was also not checked for in an ultrasound she had on her kidneys at the age of one. This life-saving organ, one of the most important parts of our immune system, does not have its presence confirmed in any formal way.
Once the doctors had this diagnosis, they assured me that there was a protocol in place to make sure Grace would never again have to become critically ill due to this rare condition. The protocol is based on research done on Sickle Cell Anemia, a condition that is different from ICA but prevents the spleen from filtering bacteria out of the blood stream.
Our protocol is this:
Penicillin 2x every day
Immediate medical attention when she has a fever of 101.4 or above or of 100.4 for more than an hour.
Fever protocol includes an Emergency Room visit for blood tests, blood culture and a preventative dose of Ceftriaxone. The hope is to be able to complete this entire protocol within an hour of the fever starting.
The protocol stresses the importance of penicillin. I remember the doctor telling me, “Every time you miss a dose of penicillin, you send her into the world unprotected.” The doctor didn’t just say my daughter needed to take a “prophylactic” or “antibiotic.” She said penicillin. The prescription has, for five years, without fail, been for penicillin.
It was a disaster at first trying to get my two-year-old to take this medicine daily. It was a fight. She was too young to be bribed and she hated the taste. We mixed it with things and bought all sorts of medication syrups, and eventually she got used to it. It became a habit. One day she even started giving herself the syringe!
Over the years her understanding has increased as to the purpose of the penicillin. When she was six she spent Christmas Eve in the ER. After this visit she asked me why her four-year-old cousin did not have to take penicillin. We told her that she doesn’t have a spleen, and how the penicillin keeps her healthy.
The penicillin has gone from being a fight, to tolerated, to embraced as a way my daughter can keep herself healthy. It’s been a journey.
Recently, the path has shifted.
While my daughter has become old enough to be invested in her protocol, the past four months penicillin has become harder to obtain because of a drug shortage.
I live in Cambridge, MA. I’m surrounded by pharmaceutical companies and labs. I live 3 miles from Boston Children’s Hospital. I took for granted that we’d always be able to access this medication. I naively believed that even in a shortage, we would get the medication because her life depends on it. That is the story we’ve been told. That is the research we have read. That is what has kept her safe for five years. That is the knowledge we passed on to our daughter so that she would have the safety of assurances and know the importance of compliance.
As penicillin became harder to find, it meant driving further afield to different CVS locations and spending time tracking it down. Last month, with Grace’s permission, we tried a penicillin tablet since it was easier to find. She couldn’t swallow it. We broke it in half and she spit it right back out. We crushed it and hid it in food and she promptly threw it up. She sobbed and begged us not to make her take it in pill form. I had flashbacks of fighting with my very ill two year old in an effort to get her to take her medication.
We did the work and found the liquid form across the river in Boston. We get a 30-day supply at a time. Last week, the doctor’s office called to inform me that they would have to prescribe amoxicillin because CVS did not have any penicillin. They could not find penicillin in our area. They reassured me that the amoxicillin “should” be as effective as penicillin and that Grace “should” tolerate the change well. That was all the explanation I was given.
I called my insurance company to find out what other pharmacies are covered. I called those pharmacies. I finally tracked down a pharmacy with penicillin only to be told they couldn’t prescribe it to me because they are a private pharmacy and I am not a member there.
I asked for answers from every place I called, whether it was the doctor’s office or a pharmacy. Why did this happen? How could it be resolved? I was told that the amoxicillin would be fine and we were lucky to have an alternative.
I didn’t feel lucky. Changes are hard for my daughter. She has not only grown used to penicillin, but relies on it for a sense of control. People don’t realize how little control kids have when they have serious medical conditions.
Changing medications may sound like no big deal, but consider this: for a child, a new medication is a new taste, sometimes a new texture. It could also mean new side effects and/or stomach trouble—all of which might be worth the risk if the medication would better serve her. But that’s not why this is being prescribed.
We are prescribed amoxicillin only because we could not get the drug we’d been told was the gold standard for this condition. And nobody even feels we deserve a better explanation! If amoxicillin and penicillin are interchangeable why have we, until this moment, only ever been prescribed the one and not the other?
I’m being told that we’ll switch back to penicillin when it becomes available, so that will be another change for my daughter. It also underscores the idea that penicillin is the better drug for her condition.
Yes, the most important purpose of the daily penicillin is to fight against possible bacteria. But penicillin did more than just physically fight off infection. It became a ritual and a part of her story. It became a taste that was familiar to her.
Perhaps most significant, and most overlooked, is that this is the medication the whole family associated with wellness and protection. After watching our daughter almost die because we didn’t know she was missing an organ, and then spending three years worrying about the pandemic and what it could mean for her, my husband and I know helplessness and fear. Penicillin was something we could do! We could get her medication each month. We could give her this life-saving medication each day. Until now.
She started the amoxicillin and so far, she’s tolerating it. She did not hate the taste and for that I’m grateful. I’m also very grateful that right now there is an alternative and that we have access to it. I count my blessings.
Among those blessings is discovering Angels for Change and getting to meet Laura Bray. The news that we would have to change Grace’s life-saving medication felt urgent to me, but it was treated so nonchalantly by pharmacies and doctors. This attempt at normalization made it all the harder. I felt like I was shouting into a void until Laura (immediately) returned my email. She offered validation, experience, and hope.
I’m sorry that there has been a need for this organization, but once you need it, it is a blessing to know it’s there. Laura has given me advice, resources, and a promise to help. I have felt less alone this week, and more empowered in this fight because of her.
I also feel more aware of how big this problem is and how important it is to increase awareness. We are not the only family whose loved one is not able to receive the gold-standard medical treatment because a drug has gone into shortage. We probably won’t be the last. But we are heartened by the fact that Angels for Change knows, understands, and is trying to help. It means so much for a family in this kind of crisis.
