Showing posts with label hydrocephalus. Show all posts
Showing posts with label hydrocephalus. Show all posts

Friday, 10 December 2010

SBS: New Zealand: Starship: 'All hell broke loose'

TONY WALL - Sunday Star Times  05/12/2010
hawkless  Karen and Ron Hawkless: foster parents of more than 50 children.
 
pamphlet The information pamphlet for parents being investigated.
 
Last week's Sunday-Star Times investigation about parents who took sick children to Starship Children's Hospital, only to be suspected of abuse, has prompted others to share their stories. Tony Wall reports. 
KAREN AND Ron Hawkless just wanted to provide a loving home for a baby boy who'd had an atrocious start to life, but found themselves under investigation at Starship for suspected abuse.
The Taumarunui couple, who run a tourism business and have fostered about 50 children over the past five years, took in the baby, David, when he was just two days old. His mother had taken drugs and alcohol throughout her pregnancy and David was left with fetal alcohol syndrome.
Karen and Ron fell in love with David and decided to adopt him.
He became ill a few days before his first birthday in July of last year, with a swollen, bulging fontanelle (the soft spot on a baby's head). Karen says she took David to Taumarunui and Waikato Hospitals but was told not to worry, and to take him home.
"I said I did not want to go home, that I was worried he was lethargic, not drinking as much as he should and very sleepy. When I looked up the symptoms on the internet, with the bulging fontanelle... hydrocephalus [fluid on the brain] came up."
Karen says she insisted on a scan and, when that was finally done, there was a sudden change in the doctors' attitudes and she was referred to Starship, where "all hell broke loose".
Starship's paediatricians concluded that David had a subdural haematoma that could not have occurred accidentally or through a medical condition – someone had either thrown him on the ground or struck him with an instrument.
A 24-hour watch was placed on David, and the watching nurse took a note of everything Karen did. "Every word I said on the phone they wrote down. Every time I cried – and I did a lot of crying – they would write that down. I used to go and sit in the toilet and turn the hair dryer on so I could talk on the phone. This went on for 10 days – 10 days of hell."
Karen says there was debate over when the "injuries" happened and whether they could have resulted from a minor fall David had had two weeks earlier.
Karen was initially told she could stay at Ronald McDonald House, but says when she arrived there late at night was told that parents suspected of abuse were not allowed there. Staff at Child, Youth and Family's Taumarunui office, who Karen says were "amazing", organised a motel.
David was discharged, but was put with another carer for a month while further investigations were carried out. Eventually he was returned to Karen and Ron, who are continuing with their application to adopt him.
Tuakeu Pilato, manager of the Taumarunui CYF office, says it was unfortunate a couple who wanted to provide a loving home for a child like David had been through such an experience.
"We [CYF] never did have concerns, but when unexplained medical injuries occur, [medical experts] need to explore that as fully as possible, both for the child's best interests and also for the carers."
Pilato says he is now "absolutely satisfied" that David's symptoms were not caused by any deliberately inflicted injury. "The child's problems are medical, there are a number of contributing factors to that, certainly fetal alcohol is not to be ruled out."
He describes Karen and Ron as "committed caregivers" who have always been open with CYF.
Karen says the fallout from the experience continues, as she now finds it difficult to get David the ongoing medical treatment he needs.
"The sad thing is, David is still having problems and no one wants to help him. I'm finding it difficult to have him properly diagnosed. His shunt keeps blocking, his head bulging at times and he is now getting bleeding noses. I can't get any help because to get help would be for them to admit that I did not hit him and throw him on the floor."
She describes the Starship experience as "horrific" and says she felt that some of its doctors seemed more interested in looking for evidence of abuse than curing David. "It's changed our lives forever, we're not very trusting of doctors any more."
Scott Macfarlane, acting head of child health at the Auckland health board, says he can't discuss individual cases, but says Starship clinicians are "acutely aware that the sensitive nature of their investigations carry the potential to offend parents".
He says Starship's procedures are designed to protect the interests of the child while keeping parents informed as investigations unfold. In many cases, he says, abuse will be ruled out.
"That does not mean Starship doctors were wrong; it simply means appropriate precautions were taken while the possibility of non-accidental injury was eliminated.
"In cases where charges are not laid, it does not mean Starship `got it wrong'; it means we provided advice based on the medical evidence and, for any one of a range of potential reasons, police or Child Youth and Family Services took a different view."
A Sunday Star-Times investigation into Starship hospital's child protection unit has revealed concerns including:
Claims the unit has become like a police station, treating good parents as guilty until proven innocent, causing ongoing trauma for families.
Claims doctors rush to judgement and are unwilling to consider alternative explanations.
Concerns that children are being made to undergo expensive, unnecessary and potentially risky scans in the search for evidence of abuse.
Claims that children are not getting the ongoing medical help they need because doctors refuse to accept it is not an abuse case.
Concerns about medical evidence given in court, particularly in shaken baby cases.
A district court judge has criticised Starship doctors for having closed minds and not considering all the evidence in one case.
Criticisms that Starship does not profile families to determine the likelihood of abuse.
Criticisms over a lack of written protocols.
 
STARSHIP RESPONDS
Its procedures represent "world's best practice''.
It has the interests of the child at heart and sometimes investigations will be "uncomfortable'' for parents.
It does not rush to judgement, but carefully considers the evidence before making further inquiries about potential abuse.
It does further testing, including scans, only when needed.
It concedes information given to parents has been lacking and has prepared written material.
Just because charges are not laid or a person is acquitted, does not necessarily mean Starship "got it wrong''.
Starship does not profile families because child abuse can happen in any family.

YOUR FEEDBACK
A selection of letters from readers who have been investigated for abuse at Starship and other hospitals.
I IMPLORE YOU to continue your investigations into the child abuse unit attached to Starship hospital. A close family member is going through exactly the same thing.
I feel that some members of the child abuse team at Starship are conducting themselves with the mindset that everyone is guilty until proven innocent. We were treated as ignorant to the facts and volatile. We were being accused collectively of not accepting the child had been abused. The professionals repeatedly used the term "non-accidental injury" as if they had seen it occur with their own eyes. The prejudice was alarming.
A quick rundown of our case: Early 2010, the baby becomes ill over a couple of days and parent takes to doctor. Doctor realises baby is in real trouble and parent rushes baby to Starship. Temporary pediatrician at Starship makes claim of "non-accidental injury" based on medical reports. Te Puaruruhau becomes involved and calls police. Police follow instructions and file charges. CYF take over care of all the children through the courts. Paediatrician goes back home overseas. Child still ill.
No independent pediatrician will reassess in New Zealand. CYF cannot return children until after court case. Police cannot drop charges because of medical evidence. Te Puaruruhau and Starship prevent all reassessments and testing to search for alternative explanations even when presented with possible causes including known genetic disorders in the family. Child still ill.
Starship and Te Puaruruhau have devastated all our lives and the lives of the children involved. It is going to take years to get to criminal trial, the children will remain in care throughout. The biggest tragedy of all is that at the centre of this is an infant whose underlying medical condition has yet to be diagnosed.
– name suppression applies
I TOOK MY daughter when almost two to Kenepuru hospital with a sore arm. I had held her hand while we were out shopping as she had been pulling items off shelves. She didn't like it and kept pulling away. Eventually she pulled hard enough that her arm was dislocated. The doctor we saw refused to consider that a child could dislocate their own arm in such a way, and therefore virtually accused me of lying and really put me through the wringer. It was a truly horrible time.
– name witheld
WE HAVE recently been through the ordeal of being investigated after our eight-month-old broke her arm when she got it tangled in her cot slats. After two months of investigations by medical staff, CYF and police, it was found that there was no abuse. The investigation was not started until three weeks after it happened.
We have made a formal complaint to Hutt Hospital and the health and disability commisioner about the process used in investigating child abuse. We strongly believe that doctors are so worried about missing a case of child abuse that they are too eager to refer to agencies and remove the responsibilities from themselves.
I am a registered nurse and find it insulting that people could think that we could harm our baby. It felt like a witch hunt on the part of the medical team. CYF and the police were great and showed a lot more commonsense.
Our baby endured 40 minutes of full body x-rays which I consider abuse. CYF had completed its investigations within two weeks but the police were unable to close theirs until the medical team had made a decision on the x-ray which took two months! In the end they sent it to an expert in the US who confirmed our version of events.
We are terrified that should we ever have to present at the hospital, we will be judged in the same way again.
– name witheld
HELPING OTHER 'TRAUMATISED' FAMILIES
The concern of a wrongly accused father prompted Starship's child protection unit to clarify things.
IT TOOK Starship's child protection unit more than seven years to develop an information pamphlet for parents being investigated for abuse, and only after a wrongly accused father drafted a set of guidelines he hoped would help families in his position.
The Sunday Star-Times has learned information pamphlets developed in December last year were based on those written by Orewa software project manager Michael Beaumont, investigated in July last year after accidentally dropping his baby. The child protection unit, known as Te Puaruruhau, was set up in 2002 to provide better co-ordination between Child, Youth and Family, Starship and police.
Earlier in 2009 former health and disability commissioner Robyn Stent had met with hospital staff to voice her family's concerns at practices in the unit, after her stepdaughter was investigated for suspected abuse.
The Auckland District Health Board says changes were made after consultations with Stent's family, and better information provided to families as a result. But documents show it was not until after Beaumont was investigated that written material was produced. Beaumont was told he was the inspiration for the brochures, after years "on the to-do list".
Beaumont developed guidelines for parents outlining the various tests and scans involved in the investigation process, explaining the steps taken to protect children and investigate the cause of injuries, and why such inquiries need to be made.
The Starship version of the brochure states "in all this, no one is jumping to any conclusions, everyone is trying to do the right thing to ensure your child is safe".
Many of the families who have contacted the Star-Times say it felt as though doctors rushed to judgement and often refused to accept alternative explanations.
Beaumont says while he was "full of anger" when investigated, he has since "done a 180" and accepts the need for such inquiries.
"I respect that they should be able to do it, but think they should handle it better," he says, adding doctors who initially dealt with his child on arrival at the hospital were particularly bad. "They really do think you are guilty and look scornfully on you."
He said parents suspected of abuse were slapped with a "section 42" notice – the section of the Children, Young Persons and Their Families Act which allows CYF to take custody of children without a warrant.
"It's a legal document saying your children are no longer safe with you and have to be removed from your care, it's a really heavy, scary document... you realise you could lose your children at any stage."
Health board spokesman Scott Macfarlane confirmed Starship's information brochures were developed "with the assistance of a family who felt traumatised by their experience".
"We hope that making this resource available will inform parents and reassure them that the process is working in the best interests of their child."
http://www.stuff.co.nz/sunday-star-times/features/4421242/Starship-All-hell-broke-loose

Saturday, 11 September 2010

By Alice Wright 9/09/2010
When Cassie Gould and Wayne Halligan took their sick son to hospital they were falsely accused of harming him - then began 11 months of hell as they tried to get their baby back.
"Nobody can describe the pain of having your child taken away from you - it's like someone putting a knife in your heart and turning it again and again.
Nobody could comfort me, nothing could take away my grief. Last year, we took our baby Cavern to hospital when we found he wasn't feeding properly and had developed little spots in his ear. To our horror, doctors said he had been shaken. From that moment our lives changed forever.
Before that, I'd loved every moment of motherhood - even getting up in the nights to feed him. It had given my life a new joy and purpose. But without him there, I woke up every morning with a heavy heart.
My partner Wayne tried his best but I was so angry and frustrated I pushed him away.
I even started drinking at weekends to try and forget. Of course it didn't work - after two bottles of wine I'd sit there weeping, frustrated that I was powerless to get him back. Doubts crept in about my abilities as a mother - had I bounced him too hard in his bouncer? Had I done something without realising it? Worse, I began to suspect Wayne of harming him, even though I knew he was a devoted dad.
Then after 11 months separated from our child, doctors confirmed he had a medical condition called hydrocephalus (water on the brain) that had caused the symptoms.
Now we've got our little boy back but I'll never be the same - when social services took my baby away they broke me. I'm still suffering.
We'd taken him to Selly Oak Hospital in Birmingham last March after we found little spots in his ears and he refused to eat - and he was referred to Birmingham Children's Hospital. Doctors there did tests and found Cavern had suffered a bleed on the brain. They asked if he'd been dropped, or if someone had hurt him, we were shocked. Of course not! He was in for three days and we sat by his bedside, before social workers came in with the police. They told us Cavern had been diagnosed with Shaken Baby Syndrome and we were under suspicion.
As we were led away I sensed the eyes of other parents on the ward following us accusingly and I broke down. Wayne was cautioned and questioned by police that same day but I was in too much of a state to talk to them until weeks later.
Outside the hospital I called my mum, sobbing while I told her what had happened.
She couldn't believe it, and stood by me over the next awful months.
For three months Cavern was in hospital, but we couldn't stay with him on our own - we had to be supervised.
At home his toys were everywhere but the flat was silent without him. I was a wreck and couldn't face family and friends. What would they think? I'd babysat for their children! People distanced themselves from me - that hurt even more because it seemed they'd decided I was guilty. Wayne didn't cry - he didn't break down once and, mistakenly, I suspected he didn't care. I knew he wasn't capable of harming our child but how could he be so unfeeling?
I lashed out over and over again - I never accused Wayne outright but he knew what I was thinking. Sometimes I looked at him and knew he was wondering the same about me. At one point the pressure got too much and we split for a few weeks.
After three months, Cavern was discharged and went to live with Roisin, Wayne's sister - I was pleased he was with family but I was missing the milestones.
I missed his first tooth, the moment he started crawling and his first words. While Roisin was looking after Cavern he was taken back to hospital where doctors found he'd suffered another bleed on the brain.
Our child protection officer called an emergency meeting where one doctor suggested Cavern might have hydrocephalus, which can cause bleeding. It was terrible to hear my son had a serious medical condition but I was overjoyed to have an explanation. And I was angry doctors hadn't said anything to us about the condition before. I thought the nightmare would end there, but one doctor wasn't convinced.
Police dropped the case but social services didn'tso we still couldn't take Cavern home. Then Roisin's daughter became ill so Cavern had to be moved again - this time he went to live with my mum. I still saw him every day but when he cried, he reached out his arms to my mum for comfort, not me. That hurt a lot. I was scared he'd begin to forget I was his mummy.
Despite everything Wayne stayed strong. I could see he was traumatised - he lost a stone in weight - but he never showed his hurt. It wasn't until December that all the doctors agreed he had hydrocephalus and in January this year a judge ordered social services to hand him back. It was only when we got on the bus to go home that it started to sink in. I was grinning and crying at the same time.
I hadn't lost my bond with Cavern but it was difficult getting back into the routine. He left a baby and came back a toddler.
I'm still trying to make that time up. Wayne and I are rebuilding our relationship. What we've been through will stay with us the rest of our lives - I thank him now for his strength in those terrible days. He kept this family together.
I want to get on with my life but it's easier said than done. If I have to take Cavern to hospital now, I'm wary and mistrustful of so-called experts. I cry at the smallest thing and feel I'm forever looking over my shoulder. I should have enjoyed every moment of my son's first year - instead it was a living hell."
WAYNE, 25
"I couldn't believe we were accused of battering our baby.
That whole period is a terrible nightmare I kept hoping I would wake up from.
We were really enjoying being new parents - then it all came crashing down. While Cavern was in hospital I was getting up at 6.30am, doing a full day at work as a builder and then going to the ward. I was exhausted but at least at work I didn't have to face the accusing eyes of people who suspected I'd beaten my baby. I knew I hadn't injured Cavern, so I couldn't help wondering if Cassie had. It's horrible to think about now but when experts say your baby's been abused you can't help those feelings creeping in. Cassie and I were arguing so much I moved out for a while.
One minute we were a happy family, the next we'd been torn apart.
I felt so powerless - it was like I'd been paralysed.
It was the biggest shock of my life when, in January, the judge finally said we could have Cavern back.
For 11 months we'd been accused of beating our child, then, just like that, it was all over. I wanted to demand an apology for everything we'd been through.
Having Cavern back is fantastic but I'm not sure about having more kids. There's no way I could go through that again."

http://www.mirror.co.uk/news/top-stories/2010/09/09/each-of-us-feared-the-other-had-beaten-our-baby-115875-22547943/