Another Tragedy, Missed Opportunity at Children’s Hospital Oakland

This week we are offering our space to Wade and Jennifer Westhoff who lost their daughter to medical errors at Children's Hospital Oakland and tried to reconcile with the hospital - even offering to help the hospital build a disclosure program - but were rejected.  Readers may remember the Westhoff family, as Sorry Works! featured them two weeks ago regarding mail - including fundraising letters - the hospital continued to send to them after their daughter's death.  Below is their complete story. Title: Another Tragedy, Missed Opportunity at Children’s Hospital Oakland

By: Wade and Jennifer Westhoff

The Jahi McMath tragedy at Children’s Hospital Oakland (CHO) is still fresh in the minds of many people.   Jahi’s story personally resonated with our family as we had lost our own daughter to equally tragic circumstances at CHO in 2013.  We are now coming forward to share our story with the hope of improving CHO.

Both our immediate family and extended family have provided significant financial support to CHO for many years.   As stakeholders in CHO, we want to report back to the community on how we have been treated by this organization.

Our twin daughters – Morgan and Hunter – were born in April 2011 with Patent Ductus Ateriosis, (PDA), which is a common heart defect in premature babies.   We felt good when the girls were referred to CHO for care of their condition.   After all, CHO is our hospital.

Hunter’s surgery was successful and she is thriving today, but, sadly, Morgan suffered major complications, resulting in catastrophic brain damage, and was declared brain dead a couple days later.

We have personally seen the best of CHO’s conduct with Hunter, and the worst with Morgan.

After Morgan died, CHO basically kicked us to the curb.  There was little empathy.   Hospital leadership did not seek us out to discuss why Morgan’s surgery went so terribly wrong.   CHO did, however, send mail to our house.   We received a patient care survey --- “How can we improve Morgan’s care?”   We also received CHO’s annual report, marketing materials, and various fundraising requests…including one fundraising letter that was dated the day Morgan died!  Absolutely cruel.

We did our own research into Morgan’s operation, and we uncovered numerous medical errors that caused her death.  Simply put, the CHO doctors injured Morgan by using the surgical equipment against the manufacturer’s recommendations, and then the CHO doctors were slow to call for surgical back up to rescue her, leading to brain death.  Our beautiful two-year old daughter was dead, and Hunter will not grow up with her twin sister.

During our research, we spoke with countless experts across the country, including people in the disclosure movement.   Hospitals and insurance companies across American are now actually teaching doctors and nurses how to be empathic after something goes wrong, stay connected with families, and if a review shows there was a mistake, apologize and quickly address the financial and emotional needs of the family.  For too long, doctors have been told saying “sorry” will encourage lawsuits, but disclosure has actually been shown to reduce lawsuits.  Disclosure also improves patient safety because when doctors talk about mistakes, they learn from them.  Finally, disclosure promotes emotional closure for not only patients and families, but also doctors and nurses.

So, in Fall 2013 we requested a meeting with CHO’s leadership.  We discussed the errors that led to Morgan’s death.  We shared how the lack of empathy and communication from the hospital compounded our grief.  We also relayed how CHO’s continual mailings – including fundraising letters – were traumatizing our family.  Finally, we offered a proposal to the hospital.

We wanted a financial settlement from the hospital, but, we offered to invest this money back into the hospital.  We wanted to form a partnership with CHO to train their doctors and nurses on disclosure, and use our joint story to help other hospitals around the county.   We wanted to make CHO better for not only patients and families, but also their doctors and nurses.   Morgan was our investment in the hospital, and we simply wanted the hospital to make a financial investment in this endeavor.

CHO’s leadership was initially blown away by our proposal.  They said Morgan’s story was “transformative” and, yes, they wanted to partner with us.  They admitted to us that they don’t have a disclosure program, and they need help communicating with families after something goes wrong.   They also promised to stop sending mail to our house. We were elated.

But then the wheels fell off the cart.

Shortly after our Fall 2013 meeting, CHO leadership refused to commit any funds and basically rejected our proposal.  They didn’t take us seriously, and it felt like we lost Morgan all over  again.   An opportunity was missed.

We warned CHO that their hospital had safety problems and their doctors and nurses were ill-equipped to deal with angry, grieving families.   CHO was non responsive.  And then Jahi McMath happened.

We continue to receive CHO mail at our house, including most recently a personal invitation for a private preview of CHO’s annual fundraiser with the CEO, Bert Lubin, MD.  So, we have notified CHO that we intend to sue.  Moreover, our family no longer supports CHO, and we have been sharing our experience with the Bay Area philanthropic community.  Maybe CHO will take us seriously now.

Ultimately, we hope to be reconciled with CHO.  We want to work with CHO in Morgan’s memory.  We want them to improve, and, again, use our joint story to help other hospitals.  We stand ready to partner again with the hospital to improve their safety and culture.   The ball is in CHO’s court.

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Here is the link for the story published by Sorry Works! two weeks ago regarding how CHO continued to send mail - including fundraising letters - to the Westhoff family after Morgan's death: http://sorryworksblog.net/?p=689.