Pippie Kruger miracle more than skin deep for her family
When Alan Barrett’s 11-year-old daughter Kailey arrived at school two weeks ago, she was humming with an excitement that seemingly knew no boundaries. She called out to her friends, gathered them into a small circle and blurted: “My father’s a hero! He made Pippie Kruger’s new skin and now she’s going to live.”
Isabella “Pippie” Kruger is the three-year-old burn victim from Limpopo who has made front-page headlines over the past month because of a revolutionary skin transplant operation for which the skin was grown from her own cells in a laboratory in the United States. It was the first time the procedure was performed in Africa. More than three-quarters of Pippie’s body was severely burned when a bottle of gel firelighter exploded while her father was lighting a braai on New Year’s Eve. Doctors initially gave the girl a 10% chance of survival.
Barrett is the medical director at Genzyme-Sanofi, a pharmaceutical company that owns the rights to the technology known as Epicel. Developed by a Harvard professor, Epicel produces skin for people with extensive burn wounds by extracting stem cells from small patches of patients’ healthy skin. They are placed on a layer of inactive mice cells and fed with special proteins that allow them to grow into thin layers of skin that can cover burns.
Barrett did not make the skin himself. But he did co-ordinate the entire process: from the culturing of the skin to getting it to Johannesburg on a 21-hour flight and working with plastic surgeon Ridwan Mia to ensure that it was transplanted on to Pippie within three hours of arriving in South Africa. The skin only had a 24-hour shelf life.
“That Alan didn’t chase me away is unbelievable,” said Anice Kruger (27), Pippie’s mother. “I had absolutely no patience with him. At times, when I became anxious about the time that it took to produce my daughter’s skin grafts, I made it clear that I thought it was his fault.”
Initially, she talked to Barrett only on the phone. When she finally got to meet him, however, she was overwhelmed. “We spoke to each other in ‘high’ English on the phone, but when he walked through the door I realised he was Afrikaans, just like me. So we hugged and kissed each other and he patiently explained the complexities of the technology. Now he has become part of my family, just like everyone else at the hospital.”
It was Pippie’s mother who came across the costly procedure during a desperate late-night Google search to find skin for her daughter’s wounds. Her plastic surgeon wanted to harvest skin from the small parts of Pippie’s body that had not been burned, but her mother would not let this happen. Kruger contacted Genzyme-Sanofi and put them in touch with Pippie’s physicians. The little girl’s medical team announced last week that the operation had been successful and more than 90% of the cultured skin grafts had transferred well to the girl.
But it has been a “draining” six months for Kruger. Since Pippie was burned, she has been home to the small town of Lephalale, formerly known as Ellisras, for only three days. The rest of the time has been spent living in a flat at Garden City Hospital and, lately, one she is renting in Melville, Johannesburg. Pippie’s heart has stopped beating five times, her kidneys have failed and she has had pneumonia. But Kruger never stopped believing that her daughter would live.
Kruger’s other child, Arno, was six months old at the time of Pippie’s accident. She mostly sees him only on weekends when her husband, Erwin, comes to visit. The rest of the time he spends with her mother on a farm outside Lephalale. “The night I got into that ambulance with Pippie, I told my mom: ‘Mamma, I can’t be a mother to Arno right now. You are going to have to take over,’” she said.
Last week Arno turned one. Kruger did not see him on his birthday, because it happened in the same week that Pippie’s doctors would assess the status of her operation. Her daughter needed her more.
“It’s really difficult for me. But, just as Arno seems to have accepted it, I have too. When I see him I see him, when I don’t I don’t,” she said.
Amid all this, Kruger has managed to raise the more than R700 000 for the Epicel procedure through a trust fund that was started by a friend. Facebook pages, with almost 10 000 followers, were opened for Pippie and her mother has been doing endless media interviews. Pippie’s story has been told in 71 newspapers across the world and by many global radio and television stations.
Although there has been tremendous support for Kruger, there has also been harsh criticism. Some people have accused the mother of focusing all the attention on her own child at the cost of other burn victims. And there have been false rumours spread about Erwin not being Pippie’s biological father and deliberately setting her alight so the family could make money. But Kruger said she was not bothered by this. “I’m not going to give the devil satisfaction and close down any of the Facebook pages because people say terrible things,” she wrote this week on Facebook.
Instead, she has decided to “focus on the positive” and to learn from her experiences. “I’ve learned not to judge a book by its cover and never to take no for an answer,” she said. “Back home, I wasn’t too open to meet new people, but here at the hospital I’ve met people that I thought I would never like, but who ended up saving my child’s life.
“At the beginning, I doubted the speech therapist knew what she was doing. Now I can’t wait for her to arrive. I didn’t know what to think of Dr Mia. Now I love him. And the occupational and physiotherapists have become part of my family.”
A day after Pippie’s operation, the porter who carried her cultured skin from the hospital entrance to the theatre came running to Kruger, beaming. “This man told me: ‘Thank you so much for allowing me to do something so life-changing, to help to save someone’s life. I never thought I’d be able to do that. I feel like I now have a purpose in life.”
Kruger said she remained unsure about the “bigger purpose” behind Pippie’s accident. “I really don’t know. But if it is to help me to play my small part in helping people like the porter to feel acknowledged in life, or for a child to believe her father is a hero, then I accept it. It has strengthened my marriage and faith in God. I’ve learned not to ask what comes next. I live hour by hour.”
The long road to recovery
From being heavily sedated for almost a week, Pippie Kruger is now awake and her tight bandage dressings were replaced with more comfortable plasters this week. She has started to eat soft foods and according to her plastic surgeon, Ridwan Mia, she will be discharged from intensive care next week to begin a rehabilitation programme at a centre in Auckland Park, Johannesburg.
Two weeks ago she underwent a landmark skin graft operation for which thin layers of skin were grown from the stem cells of her healthy skin. Eighty percent of her body was severely burned on New Year’s Eve when a bottle of gel firelighter exploded while her father was lighting a fire. Mia said Pippie’s new skin was thickening nicely, although it was still very thin on her chest.
In the past six months Pippie has had 50 medical procedures. Several involved cleaning her wounds to prevent infection and cutting away dead tissue. Her mother said one of the anaesthetists became so familiar to Pippie that the girl would spontaneously fall asleep “almost instantly” when he entered the room.
Mia said the new skin would take two to three years before it looked “normal” and took on the colour of her natural skin. According to him, it was only five to eight layers thin when it was transplanted (normal skin has hundreds of layers) and therefore was transparent. “It looks a little like cling wrap,” he said.
Because the new skin consists only of a top layer of skin, it does not contain hair follicles or sweat glands. Therefore, Pippie will not be able to sweat through the transplanted skin or grow hair. Large patches of her hair follicles have been destroyed at the back of her head and she will have to undergo procedures to expand areas that can grow hair, which will be transposed to the damaged areas.
Pippie’s chest was also badly burned and most of her breast tissue was destroyed. Mia said she would not be able to develop breasts and would need surgical procedures and implants when she was older.
She will be spending most of her time at the rehabilitation centre with speech, occupational and physical therapists. One of their main tasks will be to prevent contractures, or the permanent tightening of skin, which could result in limited movement.
“Contractures can occur with burns patients as the skin tends to tighten as it heals and the patients tend not to move much due to pain,” said Tamsen Edwards, Pippie’s physiotherapist. “If the burn areas are not mobilised, this could restrict the joint range of motion and cause a contracture.”
Although this type of therapy can be extremely painful, some of it was started a week after Pippie’s admission. Part of the process has involved using splints for Pippie’s feet, shoulders, arms and hands to keep them in positions that prevented contractures. Edwards often also attended surgery and dressing changes during which she “mobilised” Pippie’s joints while the girl was anaesthetised.
According to Carmin Wright, Pippie’s occupational therapist, bad contractures formed on the girl’s hands because initial splints had been put on incorrectly, which had resulted in many deformities. Wright is trying to correct them with special splints, which Pippie has to keep on for most of the day.
“It will take some time before Pippie regains the use of her hands and she may never be able to use her hands fully. She may, for instance, not be able to hold a pencil in a normal way, but we will help her to adapt using her hands functionally,” Wright said.
She will wear pressure garments once the dressings have been removed, which will help to protect the new skin from tearing and reduce the forming of raised scars, or keloids. She will have to wear them for 23 hours each day until she has made satisfactory progress.
Edwards and Wright will exercise Pippie’s muscles to help her to sit, stand and walk again. She has been bedridden for so long that her muscles have weakened. It is not clear how well Pippie will be able to walk.
Because her face also sustained burns, her ability to talk and swallow has also been affected by tightening of the skin.
Speech therapist Musthura Khan has been helping her to strengthen the muscles required for speech and eating. Khan said speech therapists at the centre would try to get the three-year-old to a level at which she would be able to communicate, even if it required the use of alternative forms of communication, such as an iPad.
Pippie is likely to spend three to six months at the centre and will then get a home programme and the necessary equipment to assist her with her recovery. – Mia Malan