TERSIA Burger, CEO of Stepping Stone Palliative Care Services, says she draws strength to keep going from the promise she made to her only daughter, the late Vicky Bruce.
Burger, a widow with 10 grandchildren, lost Vicky at the age of 38 after a long battle with osteogenesis imperfecta (OI), a genetic bone disorder that is present at birth.
Burger said Vicky’s last wish was for her to open a hospice so that no one would suffer like her and so that other people suffering from the life-limiting illness could experience the kindness and dedication of a hospice care service.
Indeed, she vowed to provide compassionate, palliative and holistic care to children and their families.
Burger said she kept her promise because she comes from a family that does not break promises..
The hospice based in Alberton, Ekurhuleni, is a non-profit organisation (NPO) that offers palliative care. They get their patients through referrals. They accept patients who have been diagnosed with life-limiting illnesses, including cancer. The facility allows families to spend as much time they can with patients. Some even stay overnight.
“Vicky was born with a rare disease. Even today, there is not much research because there is no cure. Her body did not produce collagen. She was diagnosed at 18 months. Doctors said she wouldn’t live to the age of nine. She did,” Burger said .
She said that at 16, Vicky learned to protect her core and her bones and seemed stronger. At 21, she got married.
“What Vicky wanted, Vicky got and she fell pregnant six weeks after they got married. We were devastated. The doctors at Wits University said she should have an abortion. She said this child is from God,” Burger said.
“She barely survived the pregnancy. She had a cute little boy. About 22 months later she had her second child, which really took its toll on her body.
“She had eight back surgeries where they did fusions but the problem with the fusion is they put strings and stuff in the spine,” Burger said.
“The neurologist said there was a new procedure and they would remove her vertebrae and put in a pro-disc. The recovery time was astronomical as it was estimated to take just two hours and 37 minutes.
“I think I should have been alerted to the fact that the medical aid wouldn’t pay, the system paid. Today I realise it was experimental and not because they were being nice. She did a lot of surgeries.”
Burger said her gynaecologist said nobody should operate on the abdomen because the tissue was so poor. Burger said when she told the neurosurgeon, he said he knew what he was doing.
“Vicky’s last words when she went to theatre was, ‘okay, mommy, see you in two hours and 37 minutes’. Vicky came out six and a half hours later, ventilated. The neurosurgeon said they did run into some issues but he called in a specialist.”
Burger said that the next day she told the neurosurgeon that there was something wrong because she knows her child. She said the doctor asked her what qualifies her to say that. Three days later he listened and took her back into theatre. She was there for 11 hours. Her whole abdominal cavity was septic.
“What I did not realise at the time is that the pro-disc that they fitted should have been removed. It continually caused sepsis,” said Burger.
“The sad thing, she would come home months after hospital with an open abdomen. We could actually see her intestines. They would burst open. Her pain was out of control.
“What we didn’t realise then was she was treated for chronic pain. With 81 abdominal surgeries … every time they worked on her intestines, she lost absorption. She was permanently malnourished and the medication did not work.”
Burger said that in February 2012 Vicky’s surgeon said she needed further surgery but he could not take her back, he would kill her in the operating theatre as her little body could not handle it anymore.
“We came home to her sons aged 13 and 15 at the time. She said, ‘you have to love me enough to let me go. Promise me no more hospital, no more surgeries’.
“We cried a lot and we promised. I started looking for a hospice that would care for her. We were so helpless, there was nothing we could do for the person you loved so much. Because she did not have cancer or Aids, they couldn’t get her into a hospice programme until September when Wits Hospice agreed to take her.”
Burger said at the hospice they put a tiny needle between her second and third ribs and the medication was infused through it. The next morning when the nurse came to refill the drip bag that had the medication, “the nurse said, ‘Morning, I’m here to see Mrs Bruce and Vicky said oh, that’s me’”.
Burger said it was a miracle that Vicky was pain-free. They could control the nausea and all the symptoms.
“It was the greatest thing because Vicky could take her children to school, watch them play cricket and rugby or for milkshake. The prognosis did not change. She was actively dying.
“In November she was really ill. On 16 November 2012 I had to give her a breakthrough morphine injection at 2am.
“She said to me she can’t do this anymore. I told her we would get through this.
“Vicky said, ‘Mommy, I’m dying. Promise me you will start a hospice so no one will suffer again the way I did.’ I promised. The next morning when her nurse came, I said Margi Billman, you won’t believe what I promised Vicky. I said I’d start a hospice.
“She said she has a non-profit that they can use. She said can I pay her salary. I said yes. We started on 1 January 2013,” Burger said.
“Vicky was our very first patient and she was also our first death.She died on 18 January 2013. Now we have adult in-patient units where we accommodate eight patients for end of life care or pain and symptom control,” said Burger.
The hospice recently expanded its offerings to build their state-of-the-art Martelise Meaker children's palliative unit - the only one in Ekurhuleni and the fourth in South Africa.
“The one thing I know today is that Vicky should have had palliative care from birth, not from five months before she died.”
Burger said Vicky was the bravest person in the world.
“Her sons, until the last six months of her life, never saw her in pyjamas during the day. She was bedridden but every day before the boys came home she would dress, put on make-up and look pretty,” she said.
Burger said they would always remember Vicky’s words, “I’m your mother, I’m not your excuse.”
Burger said all her staff members were professionally trained and she was grateful to to each one of them.
Should you be able to assist or would like to make a general donation, kindly contact Stepping Stone via email [email protected] or on call 010 442 5059.
Saturday Star