Joris de Bres shares the story of a family who almost had their child, who suffers from osteogenesis imperfecta, taken away due to a bruise caused by the brittle bone disease.
Sheryl is tearful as she recalls “the worst day of our lives” at Wellington Hospital, when she and her partner Stuart feared their baby would be taken from them in a Kafkaesque nightmare three years ago. She wants to tell her story after hearing of the baby with the broken bones, taken from her parents last month by CYFS because of an “unexplained injury”. She hasn’t spoken about it before because it’s still raw and “it’s so embarrassing to admit you’ve been suspected of child abuse”.
Sheryl has brittle bones (osteogenesis imperfecta, or OI) too. In fact, five generations of her family have the condition, starting with her great grandmother who came from Scotland. She has a son, cousins, siblings and other relatives with brittle bones. When her pregnancy was nearly full-term she fell and badly split her leg, requiring surgery to clean and stitch the wound at Wellington Hospital. Due to her brittle bones, she was going to have a caesarean birth. The doctors decided to do the two operations together to protect the child from a double dose of anaesthetic. Although the baby appeared really upset at birth, she was found to be in good health.
But from the first time she saw her new baby, Sheryl knew she had brittle bones. “You just know, from the blue sclera to the flexible joints”. They spent five days in hospital care because of Sheryl’s leg, and then went home.
In the following days, a bruise appeared on the baby’s thigh. Sheryl knows from experience that OI children bruise easily, but a bruise can also indicate a broken bone, and it can take time to show. Her son had a bruise in the same place when he was three weeks old and he turned out to have a broken femur. Sheryl just wanted to have it checked out in case her new baby had done the same. She talked it over with the midwife when she came to visit, who agreed it would be a good idea. The midwife rang the hospital to say that Sheryl and Stuart were coming in for an x-ray because the baby possibly had brittle bones. They’d only been home for three nights.
When they arrived, they were taken without triage straight to the paediatric ward. After some time, they were sent to x-ray. There was no evidence of a fracture, but the doctor said: “We don’t know what caused this bruise, and we’d like to admit you, to monitor the baby and have another look.” Sheryl said she didn’t want to be re-admitted so soon after leaving hospital, and was told “Then we need to see you back here at 9.00 o’clock tomorrow morning.”
The first sign that something odd was going on was the next morning when heavy traffic in the Terrace Tunnel meant they were running late for their appointment. At 9.10 they got a call from the hospital asking where they were. With Sheryl’s years of experience of waiting for appointments, that seemed unusual. When they arrived, the baby was immediately formally admitted. When Sheryl asked why, she was told it was “just procedure”. They were taken to a bare room in the paediatrics ward. There was no bed, and just one chair and a changing table. Sheryl and Stuart took turns sitting in the chair and on the window sill. The baby was thoroughly checked several times in the next hour and a half for other bruises or other evidence of injury. In between they were left alone in the room.
About 10.30am attention turned from the baby to the parents. They were asked questions about their relationship, and Stuart was asked to confirm that he was the father. Sheryl told them all about her family’s medical history and asked them to look up her records and her son’s records to show that they both had brittle bones. Her leg was still bandaged from her operation at the hospital just over a week previously. Four other people, including a psychologist, came in asking the same and more questions about their relationship and their circumstances.
When Sheryl and Stuart were left alone they agreed that “this has gone bad, we need to call in reinforcements.” They rang the midwife, and Sheryl’s father, who had had a similar experience with Sheryl’s sister many years previously. The midwife rang the hospital, and Sheryl’s father got hold of her OI specialist at his clinic.
Sheryl and Stuart noticed that after the psychologist’s visit, the staff vibe had changed. They now clearly believed that the baby had been harmed. The next time the senior paediatrician came in he said he’d “Googled osteogenesis imperfecta” and hadn’t found anything to explain the bruise. He’d talked to her son’s paediatric endocrinologist who confirmed that he knew the family and the baby’s brother, but couldn’t say if the bruise was due to OI or not. Sheryl and Stuart were getting more and more upset.
After more than five hours in the room, they hadn’t been offered anything to drink and had no food. The next visitor was a medical photographer, who came in without explanation to take photos of the baby. When Stuart wanted to go outside for some fresh air, he was told “We’ve been instructed that you’re not to leave the ward.” Sheryl said it felt like some weird process of interrogation. “All I wanted to know was if my baby had broken a bone. I came in there voluntarily, and all of a sudden I had no rights.”
When the senior paediatrician next returned he told them he had no option but to report the matter to CYFS. Because the parents couldn’t explain the bruise and he couldn’t explain it either he had an obligation to report it. Increasingly upset, Sheryl asked what would happen if they just went home. He said in that case there would be a court order from a judge to remove the baby from them until the matter was resolved.
Sheryl said that after he left she was “bawling her eyes out” and Stuart “wanted to punch a hole in the wall”. They were left in the room with their baby. Another half hour passed, and then the paediatrician returned to say he’d had a discussion with a paediatric endocrinologist from Starship Hospital in Auckland, who’d told them to “stop this nonsense immediately”. They were free to leave with the baby but a CYFS social worker would visit them at home later that evening.
They left the room nine hours after entering it. They were still so visibly upset that a staff member and a member of the public on the way out of the hospital stopped to ask if they were OK. Two social workers came to their house half an hour after they got home. They said they’d checked and Sheryl’s “record was clean” and that the case was officially closed. They also asked to be advised of the baby’s name when they’d decided on it so that “we can put it in the system”.
Baby Rose turned three this month. She hasn’t had any fractures, but that’s good luck as well as good management. Osteogenesis imperfecta is very random. She does have blue sclera and loose ligaments and she bruises easily, as is typical of OI children. Her brother, with the same condition, has had over 20 fractures in his 17 years.
When they left the hospital, Sheryl and Stuart were told, “if you have any feedback as to how we could do this better, please let us know” and that “you can’t let this affect how you see us, because you’ll need our help in the future.” They didn’t have the energy to do so at the time, but following the story of the parents who’ve had both their babies taken from them they’ve now asked for the hospital records as a way of helping others.
While unable to comment on this specific case due to patient confidentiality, child health clinical leader Dr Andrew Marshall said the first priority when a child presents with a bruise or signs of trauma would be to treat the injury. “We also determine how it occurred, if it was witnessed, and whether there is a good explanation for the injury. We do not take further action if the injury fits what was witnessed or what we are told, there was no neglect or poor supervision, and there was no violence from another person.
“If an injury can’t be explained, or does not fit the explanation, we must thoroughly investigate the injury and surrounding circumstances. That might involve other tests, such as x-rays or blood tests. It may also mean a period of nursing observation in hospital to ensure the child does not have more serious hidden or internal injuries, or to provide pain relief.
“It usually also involves a more senior doctor interviewing parents, gathering background information, and talking to hospital social workers and/or the Ministry for Vulnerable Children Oranga Tamariki (formerly Child, Youth and Family). This process can take some time. If there are significant concerns about the child’s safety, we ask that they stay in hospital until we’re sure they can go somewhere we know is safe.
“We understand the distress this process can cause families, but we try to give clear information at every step. Ultimately, we would not be doing our job if we allowed a child who had been intentionally injured to leave hospital and return to an environment of risk. Although some families are distressed by the experience, we explain what we are doing and why. Families understand our first priority is to ensure children are safe, and that we do what we need to ensure – wherever possible – that no child is harmed when there was an opportunity to prevent it.”
*Names have been changed in this story to protect the family’s privacy.
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