FIGHT FOR YOUR CHILD; EXCLUSIVE ANOTHER PARENT'S BATTLE A court ruled my little boy had to die. But where there is life there is hope so always..Byline: By DAMIEN FLETCHER
NO judge could ever be charged with a more painful decision.
Today in the High Court, two parents will plead that their desperately ill child be kept alive.
But the consultant caring for 17-month-old Baby M will argue that the little boy, incurably in·cur·a·ble
1. Being such that a cure is impossible; not curable: an incurable disease.
2. sick with spinal muscular atrophy Spinal Muscular Atrophy (SMA) is a term applied to a number of different disorders, all having in common a genetic cause and the manifestation of weakness due to loss of the motor neurons of the spinal cord and brainstem. , should be allowed to die "with dignity".
If the judge agrees with the doctors, Baby M will die within minutes of his breathing tube being removed.
It is a heartbreaking dilemma. For the parents, for the dedicated hospital staff, and for the judge.
Baby M's parents have yet to speak of their own nightmare, but Ruth Winston-Jones will understand their agony.
Her baby son Luke died in November 2004 after the High Court allowed Liverpool's Alder alder (ôl`dər), name for deciduous trees and shrubs of the genus Alnus of the family Betulaceae (birch family), widely distributed, especially in mountainous and moist areas of the north temperate zone and in the Andes. Hey hospital to withhold treatment.
Today she has no doubt where the fate of the baby lies.
"It should be the parents who decide, not a court," says Ruth, 36, speaking exclusively to the Daily Mirror.
"Baby M should be given all the medical help he needs. Why put the parents through all of this? They are going through enough trauma as at is.
"It's bad enough to find out your baby is seriously ill, but having to fight for them to get treatment is unbearable."
Ruth, from Holyhead, Anglesey, already had two children, Andrew, 13, and Sophie, eight, when she gave birth to Luke on January 30, 2004 by Caesarean section at Gwynedd Hospital.
"He was premature and weighed just 3lb 5oz," she says. "I had doubts about having another child as a single parent, but as soon as I saw him was absolutely thrilled.
"He had dark brown hair and tiny blue eyes. Hearing him cry and seeing his face felt better than winning the lottery."
But five days later, doctors took Ruth aside to deliver terrible news.
She says: "They told me Luke had a big hole in his heart. I couldn't breathe, I was so shocked and full of fear for my baby.
"They said he would need an operation at Alder Hey Hospital to insert a rubber band to protect his lungs, and another to patch up the hole. But they said he would be OK."
She was told that if Luke did not have the operation, his lungs would flood with fluids and he would eventually die from heart failure.
But as he was about to go into theatre, Ruth was told that there had been a disagreement about when he should have the operation, and they were going to observe him for a while instead.
"I was baffled, but I accepted it," she says. Luke was transferred to Liverpool Women's Hospital Liverpool Women's Hospital is NHS Foundation Trust in Liverpool, England. The Trust uses the Single Transferable Vote voting system to elect its Members' Council. References
1. ^ NHS Foundation Trusts using STV - STV Action. for tests.
Ruth says: "I was pacing the floor waiting for the results."
The news from the tests was dreadful - Luke was diagnosed with the rare Edwards Syndrome which causes serious problems with a baby's heart and lungs.
Ruth says: "The professor showed me a book with pictures of children with these defects.
"I was immediately in denial in denial Psychiatry To be in a state of denying the existence or effects of an ego defense mechanism. See Denial. , I thought they were talking about another baby.
"The professor said that as he grew older, Luke would most likely not be able to walk and he would be in a comatose co·ma·tose
1. Of, relating to, or affected with coma.
2. Marked by lethargy; torpid.
comatose (kō´m state, that he wouldn't even be able to turn his head.
"He said it was very rare for male babies with the condition to live beyond a year - and they would not be operating on him.
"I was left with the impression that he would die within the next few months."
RUTH was devastated dev·as·tate
tr.v. dev·as·tat·ed, dev·as·tat·ing, dev·as·tates
1. To lay waste; destroy.
2. To overwhelm; confound; stun: was devastated by the rude remark. . She says: "I felt like I was dying, that I wanted to die.
"Only the fact that Luke was alive kept me going, because where there's life, there's hope."
Her nephew Matthew had done some research on the internet and discovered that babies had survived Edwards Syndrome.
"It was then that I realised that all was not lost," says Ruth.
But one day after the diagnosis, Luke's breathing rate dropped.
She says: "I held his hand and kept shouting, 'Come on, mum's boy! Come on!' And he started breathing normally again. That's what I did whenever we nearly lost him, and it always worked. He was such a fighter."
It was then she decided she was going to fight to make sure her son got all the treatment he needed.
"I was determined Luke was not going to be treated differently to anybody else. But I was told Alder Hey would not operate on him.
"They'd told me that this hole in the heart could kill him, but I knew he could live with the Edward's Syndrome if they fixed his heart.'
"But the hospital officials just said that the decision had been made. I was stunned stun
tr.v. stunned, stun·ning, stuns
1. To daze or render senseless, by or as if by a blow.
2. To overwhelm or daze with a loud noise.
3. . It seemed to me that this was a children's hospital A children's hospital is a hospital which offers its services exclusively to children. The number of children's hospitals proliferated in the 20th century, as pediatric medical and surgical specialties separated from internal medicine and adult surgical specialties. refusing to treat a baby."
Three days later she was taken aside by another doctor for a meeting about Luke's future.
Ruth says: "The bottom line was they did not want to put him onto a ventilator ventilator /ven·ti·la·tor/ (ven´ti-la-tor)
1. an apparatus for qualifying the air breathed through it.
2. a device for giving artificial respiration or aiding in pulmonary ventilation. or a life support machine if he became very ill.
"I just said: 'Don't you think I've been through enough?' Here I was fighting for my little boy's life, and fighting against this uncaring system. It was appalling. He said he'd talk to their lawyers about it. Two hours later he came back and said that for that night Luke would be given treatment if necessary, but they would review the situation."
He survived the night - and many more. She says: "Luke was transferred back to Gwynedd hospital and we had some happy months together.
"He was sucking sucking
the application of suction to an object by the mouth.
instinctive enthusiasm of the neonate to suck on a teat, or any object which even remotely resembles a teat. a dummy Sham; make-believe; pretended; imitation. Person who serves in place of another, or who serves until the proper person is named or available to take his place (e.g., dummy corporate directors; dummy owners of real estate). and he was breast feeding breast feeding Pediatrics The provision of a neonate and infant with liquified lacteal products 'on tap'; lactation and BF–≥ 6 months before age 20 is associated with a relative risk of 0. three or four times a day too, even though I'd been told it was impossible for him to suck or swallow because of the syndrome.
"Then he gave me his first smile, which they'd also said was impossible."
But Luke's health started to decline. "He was losing his strength, he could breathe but he couldn't suck his dummy. "I knew his lungs were flooding and he was dying slowly in front of me.
"I was desperate for him to have the heart operation. I used to cry on my own in the accommodation at the hospital." In October 2004 she was told Luke was going to be transferred back to Alder Hey Hospital. She says: "He was deteriorating, but I was so happy he was still alive and I was able to hold him."
But two weeks later doctors told her that Luke was slipping away.
Ruth says: "They told me they really did not want to use mechanical ventilation. And because I disagreed, they would go to court to get permission if necessary." The law allows doctors to decide to withhold treatment - unless a parent disagrees. Then the case, like Baby M's, must go the High Court.
"I pleaded with them not to give up on him. I was crying for Luke, because he had fought so hard. I felt guilty because I couldn't help him, but I know now it wasn't my fault.
"I didn't want to go to court, I wanted them to operate on my son."
Later that month doctors were given permission in the High Court to withhold mechanical ventilation -and on November 12, 2004, Luke died.
Crying as she recalls that day, Ruth said: "I'd spent the day with him as usual, and I'd kissed him and cuddled him.
"It took more than an hour for him to die.
"I wanted him to die in peace, with dignity, not like this. And I believe he would still be here today if he had been given that heart surgery." A spokesperson from Alder Hey Hospital said: "The hospital sought to act in the best interests of Luke Winston-Jones - as it does with all its patients.
"The judge ruled that limitation of unnecessary and intrusive treatment was in Luke's best interests and the Trust complied fully with the Judge's directions."
The case is similar to that of Charlotte Wyatt, two, who has been severely disabled since birth. A High Court judge ruled in February that doctors in Portsmouth could withhold treatment. She is still alive.
But whatever the court decides in the coming weeks, Ruth believes the parents of Baby M must continue their fight.
"I know the agony of watching your own baby die when you believe the hospital could be doing more.
"I would say to these parents: 'Never give and never stop fighting for your child'."
The picture on Page 23 of yesterday's Daily Mirror was not, as stated in the caption, Baby M.
Voice of the Mirror: Page 6
UPSET: Yesterday's Mirror' Little fighter Ruth holds her desperately ill baby in her arms. Luke lived for just 10 months' SYMPATHY: From Wyatts' MEMORIES: Ruth, Sophie and Andrew with Luke's picture Pictures: ANDY ANDY Andrew
ANDY US Popular Abbreviation for Andrews AFB STENNING