)
“Don’t be afraid of being bold and asking for the moon, it’s possible that people will say “YES!”-Catherine Rose
Catherine Rose completed three degrees in 4 years at NC State, a BA in Spanish, BS in Mechanical Engineering and BS in Applied Math. Then she went to Stanford for a PhD in Mechanical Engineering, rounding that out with an MBA in Finance from University of Massachusetts. But with all that, she says her real education started when she became a Mom.
I have an “MD in Alexis”
In 2005, Catherine and her husband Matt Schnaderbeck were expecting twins. A normal amniocentesis led them to believe their pregnancy would be uneventful. Yet at 29 weeks, Catherine didn’t feel well, rushed to the hospital and learned that one of the twins had died. Put on strict bed rest, Catherine worked full time from home and carried the twins to 37 weeks.
Born February 8th 2006, Catherine and Matt saw Alexis was whisked to the Neonatal Intensive Care Unit (NICU). Then they said goodbye to their other daughter, Kaitlyn. ” Not long after her birth, the first words before we saw her” were from a physician who came to their room to say, “’she was going to die within the first month, and if not before her first birthday…You should call your family and friends to meet her; she doesn’t have long.’”
Alexis is now 8 years old. Eighteen specialists monitor Alexis at Boston Children’s hospital. In a post written for Children’s Hospital that received over 10,000 comments, Catherine listed 15 challenges Alexis faced at age 1 including developmental delay, swallowing difficulties, nasal airway blockage, narrowing of arteries, deafness and visual impairment. In a recent tweetchat, Catherine put it succinctly: “She wears hearing aids, glasses, has a g-tube and sleeps at night with CPAP. Basically there is something wrong with each of her organs.”
Being “Internet Miners”
“Caregiving for Alexis is providing love and care to her. It’s also…accessing resources to allow her to fulfill her dreams,” Catherine explains. This is where being a researcher is a necessary skill.
“In one scary situation, Alexis’ doctors were stumped about her ongoing kidney issues and I mapped out her potassium levels from 3 different hospitals over 1 year. I found her diagnosis via Dr Google and then emailed the head of Kidney department and asked for their best doctor for treating Alexis’ condition. (note: I have no medical training, just read everything I could on the Internet).”
It was after Alexis survived, bouncing back from several crises in NICU and finally being discharged from the NICU that “I realized that Alexis’ care rightfully belonged with me…” Catherine states.
I thought I was really bossy at the hospital because I was so outspoken and particular about Alexis’ care.” Only years later, in 2010 when she met Dave deBronkart (@epatientdave)…did she realize she was “just an “ePatient” for Alexis.”
Internet mining is just one part of the family’s search to find answers to Alexis’ (and to a lesser extent her little sister Jessica’s), medical mysteries. They’ve had 6 distinguished medical institutions conduct genetic testing to provide them with something they long for: a comprehensive diagnosis. For Catherine, a comprehensive diagnosis means that experts work together to see their child as a whole and communicate to come up with solutions through collaboration.
Unfortunately they only have a diagnosis of “Alexis Schnaderbeck syndrome” (a population of one, Alexis). Yet again, Catherine’s Internet research has been invaluable. With the help of a post by a parent going through a similar struggle, Catherine and Matt are now connected to the CHARGE Syndrome Foundation. (CHARGE is an acronym for Coloboma of the eye, Heart defects, Atresia of the choanae, Retardation of growth and/or development, Genital and/or urinary abnormalities, and Ear abnormalities and deafness).
“We have learned a lot – what treatment options are possible, what surgeries to avoid, what surgeons to avoid, what other parents do in our situations and more! But most importantly as a parent, we are now connected to families throughout the world who finally get us. We are synchronized to a network via email and Facebook of compassionate and welcoming families. We are connected to a wealth of information because we are the e-patients – empowered, engaged, equipped and enabled.”
Catherine points out a flaw of medicine when she states that the medical world doesn’t “realize the power parents can have by being connected to others – and no one in the medical world suggested we join the CHARGE Syndrome Foundation.”
Over the years, Catherine has juggled full time work, full time caregiving as well as the emotional stress of having a child with significant medical problems. She has been vigilant to create a team of physicians who can work with them. Physicians are voted off the team if they are not able to believe in Alexis or cannot share Catherine and Matt’s priorities.
Fortunately, Alexis has parents that are gifted organizers and managers. Keeping up with her records and history is daunting: even someone as organized as Catherine wishes “…that this journey wasn’t so hard.” Specifically, Catherine has been struck with the medical community’s focus on tests that Alexis “fails.” Catherine and Matt began their journey with the words ““Alexis is going to die…” Catherine states, “Those words are still etched in my heart,…not all Doctors know the future – they know what is presented and cases that they have seen.”
Catherine’s plea to medicine in her Boston Children’s Hospital post resonates with many parents and patients.
“As a parent of a sick child, I’m asking medical professionals to think about how their actions impact those they treat… here are a few things to things to keep in mind:
Always acknowledge, appreciate and respect the family.
Please understand why we are so anxious to know a diagnosis. We appreciate your desire to be thorough and “solve” our child’s problem, but that solution is often just the beginning for us. We’re anxious to know how our lives will change and to find ways to balance that change with parenting techniques that will make our children’s lives better.
We need to be partners in the care of our kids. You see them for a few hours every year; we keep them alive for the other 8,755 hours.
We know that part of being a team means getting bad news. However, you have the power to layer those conversations with as much hope and understanding as possible. Please do your best to exercise that power.”
Catherine is energized and using her work to make a difference. Our next post will explore this phase of her e-caregiver journey.
Catherine – you are so right! My “kid” is now 18 & has Usher syndrome – it’s rare, we were discouraged from getting testing to confirm the diagnosis, and told there was nothing anyone could do about it. He’s in college now. You are so right about the importance of parent connectivity, and the respect parents needs & deserve from the medical community. Thank you for sharing your story!