12:15 - 12:35 pmSaturday, September 28
LK 130
Engaged, equipped, enabled, and empowered by LOVE
LK 130
Engaged, equipped, enabled, and empowered by LOVE
Senior Product Manager, Healthcare Lighting @ Philips
I let the hospital manage my daughter’s care until I could stand no more. I could understand that there was just no way to control the fact that Kaitlyn had died in utero.  But after we had said farewell... Read more


I let the hospital manage my daughter’s care until I could stand no more.

I could understand that there was just no way to control the fact that Kaitlyn had died in utero.  But after we had said farewell to Kaitlyn, Alexis’ still-born identical twin, and the doctors’ first words about Alexis were about her impending death.

I would go on to see the hospital fail to:

  • write an appropriate feeding regimen,
  • diagnose her blocked right nostril,
  • diagnose her bilateral severe hearing loss, and
  • diagnose her rare kidney disorder.

The worst wasn’t until Alexis was home and I requested her medical records.  When a nurse-friend reviewed her records, her immediate response, “You realize that Alexis almost died during her fundoplication and g-tube placement surgery?”  I had no idea. The anesthesiologist had said, “Alexis had some blood loss, but she’s recovering in the NICU.” The surgeon remarked, “Just a minor complication in the surgery since her right triangular ligament was attached her spleen instead of liver.”

And since April 2006, I have resolved to know and be aware of all aspects of Alexis’ treatment and care. We have gained 18 different specialists to cover her intertwined complexities. She has seen four different geneticists but she torments them by passing all of their tests.

In 2010, I fell into contact with ePatient Dave and found out what I had become – an ePatient for Alexis. I had become empowered, engaged, equipped and enabled.

We had taken many steps, all seemingly small at the time:

  • We joined CHARGE Syndrome Foundation that has given us examples of hope, new treatments to explore and a network of families.
  • We documented and disseminated our details of Alexis’ medical records, which doctors comment are better than the hospital EMR.  We are the experts in Alexis’ medical care and history, period. (For images, see: http://bit.ly/13coPfu)
  • We have voted doctors off of Alexis’ team. We have endorsed doctors to other families.  We even recruited some of Alexis’ doctors to complete her younger sister’s heart defect repair.

I am passionate to making sure that Alexis’ care is not an exception; that it is the norm and that parents know they should insist on it.

No parent should feel:

  • inferior to a health professional because of educational status
  • isolated because of a rare disease diagnosis
  • alarmed because of the complications of their child’s medical issues
  • helpless because the complexities and healthcare system bureaucracy
  • hopeless because of future path outlined by clinicians

We were told that Alexis would die before she turned one month old, she’s now living 84 months into the future than what those doctors could see.

She is my futurist, caring for her is seeing into the future.  A future that:

  • Consolidates silos to care for patients in their single body.
  • Cares for patients where they are – home, community, hospitals.
  • Communicates compassionately.
  • Creates a future for Alexis’ health and well-being.

As a female engineer, Catherine Rose constantly asks “Why?” and sees challenges as opportunities for creative, unexpected solutions. When her daughter’s doctors were stumped, Catherine aggregated the blood work data from three hospitals, researched via google and then emailed the Chief Nephrologist saying "Alexis has Pseudohypoaldosteronism Type II, who can help confirm my diagnosis and treat her?"  Catherine is thrilled to share her perspectives to help others organize and embrace the positive on their journey. In her professional role, Catherine took her passion to the healthcare industry so that she could help more children. She’s currently working on the launch of a product, LightAide, to enhance Alexis’ ability to interact with the world using Philips LEDs.

Catherine graduated from Stanford University with her Doctorate and Masters in Mechanical Engineering. She completed her MBA in Finance from University of Massachusetts Lowell. Catherine, originally from North Carolina, studied Mechanical Engineering, Applied Mathematics and Spanish at North Carolina State University.


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