Children’s Hospital Oakland cuts the ribbon on new room for seriously ill children

on August 9, 2012

On Wednesday, the palliative care suite at Oakland Children’s Hospital and Research center was re-named “The Edward W. and Yuri H. Chin Reflection Room” in honor of a pledge of $250,000 from the couple. The suite, which was opened last November, is a miniature apartment that consists of a bathroom, living room, bedroom, kitchenette and den that gives families a private space that feels like a home to enjoy quality time with a child who has a life-limiting illness, particularly children who are dying or have just died.

Twenty years ago, the Chins lost two sons as babies to muscular dystrophy and have been avid supporters of palliative care ever since.  Palliative care is a holistic methodology that allows families extra support when their children have major illnesses. Parents have the assistance of social workers to interact with the many doctors and medical personal they may come into contact with, help with siblings, and the ability and space to make unorthodox decisions about their child’s care. Use of the reflection room can be one of the many options available.

Palliative care “is not end of life care. I want to disabuse everybody of that notion,” said Dr. Vivienne Newman, director of the palliative care program.  “It’s additional support to relieve pain and suffering throughout a child life who has any kind of life limiting or life long condition.”

Before the ribbon cutting ceremony on Wednesday afternoon, Cindy Collinson, a registered nurse who works in the neonatal intensive care nursery, lead the Chins, their daughter Amy, and other attendees on a tour of the freshly redesigned suite.  The new logo to the right of the door features a big and small butterfly. According to Collinson, the butterfly stands for metamorphosis from one stage to another, and the differing sizes represent the parent and child together.

Newman explained that the space was designed with the needs of the family members who will use it. For example, she said, part of the design had been inspired by a mother who told her that she wished she could lie down with her baby, to be able take him outside for fresh air and sunshine, to allow him to not have medical equipment attached to him some of the time, and to have space for family and friends to come and go.

As a result, the bedroom windows in the suite can be opened for fresh air and natural sunlight.  The bed had a hand-made quilt made by volunteers that the family will later get to keep. In the den, special attention to detail makes it a welcoming environment for siblings, with a child-sized table and chairs were placed next to a flat screen and a large “Incredibles” movie poster from the Pixar animated feature mounted on the wall.

According to Paula Lykins, Children’s Hospital Oakland’s communication’s manager, many parents have used the reflection suite as a quiet place to think when deciding which medical options to choose.  Some have opted to take their children outside under the shade of a 152-year-old Magnolia tree and hold them while they pass away.

“Now when we talk to families we ask them, ‘What’s important to you?’” said Newman.  “I know every family wants a miracle, and we can’t always give them that miracle. So empowering people is one of the things we pay a lot of attention to.”

A tile at the entrance of Children’s Hospital Oakland in memory of the Chin’s sons.

Donor Edward Chin owns AIS Insurance, an independent company that provides health insurance and employee benefits for small businesses and sole proprietors.  The Chins have pledged $250,000 to be paid after the death of either member of the couple.

Time has not softened the memory of loss of their two baby boys, the family said.  “We brought the first one home with us. We didn’t know what was wrong him,” said Yuri Chin.  “That was kind of tough, because we were a family by ourselves. We had our firstborn son around and we couldn’t really tell him anything because we wanted to make his life happy.  It was really difficult.  Having a room like this would help the families.  Not only are they here [in the hospital] but they have staff to help them through their grieving and dealing with that time in your life when they need support.”

After the tour and the ribbon cutting ceremony, the group crossed the hallway to enjoy a reception. Edward Chin was presented with a gift of glasses engraved with a frosted Children’s Hospital logo and Yuri was given a bouquet of multi-colored roses.  Amy, who will be entering college this year to study music performance, was presented with gifts as well and invited to come back and perform for patients.

Newman said she was pleased to announce that thanks to an additional gift from the Chin family, the hospital had purchased a new “non-hospital-like” bed and a fold out sleeper chair that will allow parents the opportunity to stretch out and cuddle with their children. The new bed is expected to arrive soon.

About a dozen professionals who provide support in palliative care including a chaplain, social workers, nurses, doctors and Dr. Mary Jones, the attending physician who supported the Chins through the loss of their sons at Children’s Hospital Oakland, came to celebrate and give thanks for the gift.

In her closing remarks, Newman shared how the reflection room has already made a great impact on patients and their parents. “I want to say that the reflection time has been used more than twenty times in this last year, both by families whose children have died in various parts of the hospital and by families who’ve chosen to withdraw support under very difficult circumstances where they just wanted to be with their children in their last hours,” she said. “So thank you very much.”

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