Amber’s story: An unanticipated quality of life

[EDITOR’S NOTE: This is the final article in a two-part series telling the story of Amber Satterwhite. Part one, "Amber’s story: Joy on Christmas Eve," detailed Amber’s journey from the time she collapsed into a diabetic coma at age fourteen in 1995, until the present. ]

MIAMI (FBW)–While at times it might seem cruel that 22-year-old Amber Satterwhite has not mentally progressed beyond a 3-year-old, her mom said that’s not a reason to cast doubt on her quality of life.

And neither is it right to ask Terri Schiavo’s parents, Bob and Mary Schindler, to give up on their brain-damaged daughter, said the Miami mother of three.

At fourteen, Amber Satterwhite, a brittle diabetic, was struck by seizures and sank into a diabetic coma. Determined to be in a persistent vegetative state after suffering an anoxic brain injury, the now twenty-something high school senior defied medical prognoses to walk and talk. She is graduating from a program for disabled students this spring.

However, even with intensive and aggressive therapies and constant stimulus, there is little hope that Amber will ever function on her age level or fully recover from her brain injury.

Despite that, her family believes she is a blessing and that she is capable of having an unanticipated quality of life. Speaking of the times she spends as an "unofficial helper" in the nursery of North Palm Baptist Church in Miami, where her father Ron is pastor, her mother said she continually interacts with others around her.

"The joy in her face; the joy of her participating in activities, it’s unbelievable," Melody Satterwhite told Florida Baptist Witness during an interview in the Satterwhite’s Miami home. "The kids love her and she not only enjoys a quality of life, but she brings joy to others."

Melody said Amber may not have the quality of life they would have wanted, but "right now that is what God has for her and right now she does have a quality of life."

Terri Schiavo

Talking about Terri Schiavo, the 40-year-old brain-damaged woman from Clearwater, Melody surmised she has not had the same chance for a quality of life as Amber.

"God entrusted Amber to us to do everything that we possibly could to get her through," Melody explained. "I believe that Terri’s parents want to do the same thing."

Terri Schiavo’s husband and legal guardian, Michael Schiavo, according to court records and an earlier interview with the Schindlers, has not sought aggressive therapy for Terri in nearly a decade. After winning a malpractice settlement in 1992, Michael placed a "do not resuscitate" order on Terri and more than eight years ago began a long-term relationship with another woman with whom he has now fathered two children.

In October, the case received national attention after the Florida Legislature empowered Gov. Jeb Bush to issue an executive order which provided for the reinsertion of Terri’s feeding tube which Michael Schiavo had requested removed six days earlier. The authorizing bill was dubbed, "Terri’s Law." It was predicted that Terri would have died within 7-10 days had her only source of nutrition and hydration not be reestablished.

Michael Schiavo has since sued the governor, saying the order is illegal according to Florida’s Constitution and continues to fight to remove Terri’s feeding tube. The Schindlers have continued to ask for Michael Schiavo to be removed as Terri’s guardian, and have also asked to be allowed standing in the case.

Melody Satterwhite said in the interview she believed the Schindler’s haven’t been given the opportunity to provide Terri with the best chance for recovery.

"That’s their child, and if allowed, they could get her the therapy she needs," Melody said.

Citing Amber’s slow, but dramatic recovery, Melody said she believes hyperbaric oxygen treatment, the kind Amber received, might offer hope for Terri’s improvement.

"I saw every single day, miracles taking place," Melody said. "Terri’s got to have parties, she’s got to have music. She has to have stimulation. I see a lot of things and I get frustrated because, I ask, ‘Have they done everything?’ When one doctor says ‘no;’ fine, you go to another doctor. You keep going."

Miracles aside, Richard Neubauer, the same doctor who treated Amber, filed an affidavit with the Pinellas County Court May 31, 2001, rendering a medical opinion that said Terri was neither "brain dead" nor in a "persistent vegetative state" as some doctors had determined. Indeed, Neubauer predicted Terri could improve given proper hyperbaric therapy.

"In my opinion, to forego treatment of this patient and deny her nutrition and hydration amounts to murder," Neubauer said in the sworn statement.

Counting the cost

The cost of aggressive therapy does not come cheap, however. Whether it’s treatment in a hyperbaric chamber, or expensive speech therapy in Beverly Hills, Calif., the financial obligation can tax both a family’s pocketbook and their patience.

"Financially, we are ruined," Melody said, matter-of-factly. "We have taken everything we have and spent it on her." And if they had more money, the family would take Amber to California for more speech therapy, Melody added.

Only recently were the Satterwhite’s able to gain access to a governmental program that helps supplement insurance when it comes to taking care of Amber’s need for constant supervision, and other programs that allow the Satterwhites to have some time off.

Melody Satterwhite works at the Miami Baptist Association, not only to help supplement the family’s income, she said, but to also spend time involved in ministry projects while Amber is in school.

Outside of some contributions to help the family take Amber to California for speech therapy years ago, the Satterwhites do not have a medical trust from which to draw and have not received funding to explore further therapy options.

"Too many people say, ‘Here’s this box and Amber fits into this box. This is what you need to do. This is your lot in life; go for it,’" Melody said. But while she and her husband Ron believe Amber would benefit from more therapy, they simply can’t afford it.

And while Amber’s parents believe in taking personal responsibility for the welfare of their daughter, they also believe it’s not wrong to ask to participate in government programs that help fund her care.

"She’s a human being and she is alive and she is worthy in God’s eyes," Melody said, citing a Bible verse, Jeremiah 29:11: "For I know the plans I have for you. Plans to prosper you and not to harm you. Plans to give you hope and a future."

The emotional cost of caring for Amber has also been high, Melody admitted, saying Amber’s situation causes her to neglect her other children and has hurt her husband’s ministry in some ways.

"We are there to minister to the people, not to burden them with all this stuff," Melody said. She believes many churches would not be able, or want to deal with the flexibility the family needs in order to take care of their daughter. But through it all, she maintains, God has provided for their needs.

"It would have been easy to say, ‘OK, this is God’s will. Pull the plug and let her go on.’ But you see her now, she’s talking," continued Melody. "Every day she’s picking up new words and continues to improve."

Forecasting the future

As far as the future is concerned, Melody said Amber’s vulnerability for seizures remains high, as does her need for strict monitoring of her diabetes. And there are unanswered questions about what the family will do once Amber finishes high school in May. One option is placing Amber in a group home with other disabled adults.

"Only God knows what going to happen," Melody sighed. "That’s real hard."

Describing recent conversations with her 19-year-old son, Dean, Melody said he has urged the family to not discuss the matter until after he returns from Army duty in Iraq.

"It’s hard," Melody said, tears belying her matter-of-fact exterior. "I would not want Amber to be a burden on my other two kids, because I know how hard it is on my husband and me."

Nevertheless, Melody said Amber needs the socialization and stimulation a group home would offer. Without it she will "shrivel up and die."

"We can only give Amber so much. Amber will need more," admitted Melody.

For more information, or to invite the Satterwhites to speak at your church or event, please call Ron Satterwhite at 305-494-3895; or call Melody Satterwhite at 305-271-5600 or e-mail melodys@miamibaptist.org.