‘Bubble’ baby loses battle for life

‘Bubble’ baby loses battle for life

12/12/06

A BUBBLE’ baby who couldn’t be touched because he was born without an immune system has died.

And devastated parents Rukhsana and Hamid Nadeem, of Nelson, spoke of their heartbreak after only being able to kiss baby Zohaib after he died.

The death has shattered the family and mystified doctors as five-month-old Zohaib had appeared to be making a promising recovery after a bone marrow transplant.

The procedure was carried out to replace a faulty gene causing an inherited condition called Severe Combined Immune Deficiency Syndrome (SCID). If SCID is left untreated, all babies with it die before their first birthday.

His parents were expecting him to be discharged soon from the Children’s Bone Marrow Transplant Unit in Newcastle-upon-Tyne, where he had been since birth. Newcastle is one of only two units in the UK and Ireland capable of providing the care needed for bubble’ babies. However his condition suddenly deteriorated on October 31 and despite medicos’ best efforts his life support machine was switched off at 6.30pm.

Rukhsana, 26, of Summer Street, said: “We can’t believe it. He had a lot of pressure on his heart and suffered a large haemorrhage. His lungs had been damaged, which led to his death. He was on a ventilator and his heart stopped three times. Doctors tried to resusciate him but he’d gone.

“Doctors have done a biopsy but still don’t know why it’s happened. I got to kiss him for the first time when he died, it was heartbreaking. The family came to the hospital when he had died and that was the only time they had been able to hold him.”

His mum was the only person allowed to pick up baby Zohaib because of his rare condition.

He spent most of the day in a sterile bubble incubator of clean air and came out only to be breastfed and changed by his mum, who had to follow a strict regime, scrubbing with disinfectant and wearing a special gown. Dad Sajid and older brother Hamid, four, who was born with the same condition, faced the daily heartache of not being able to kiss or cuddle the latest family arrival.

Rukhsana added: “Everyone on the ward loved him to bits. Despite everything he had to go through he was always such a cheerful baby and always smiling. For Eid we bought some lights in plastic tubing and put them around the bubble. He loved those lights.”

She added: “Hamid doesn’t understand what’s happened. He was saying when are you going to wake the baby up? I want to sleep next to him tonight’. I didn’t know what to say so I told him he had been taken to another hospital to be looked after there.”

“We thought he had made a full recovery. He was the healthiest baby on the ward so all the parents are devastated too because they’re thinking if this has happened to Zohaib, what’s going to happen to their child.

“It was just so sudden. He was our little bundle of joy and he was loved so much. I have tried to be strong and said to all the other parents that it was his time to go.”

Rukhsana went through a painful bone marrow transplant after tests showed she was a 100 per cent match for him. She did the same for her first born, Hamid, who also had the condition but has recovered.

Rukhsana, who had to give up work as a carer at Palace House Nursing Home in Padiham when she discovered Zohaib’s illness, had been keeping a constant vigil at her son’s side.

The funeral was last Thursday at Pleasington Cemetery, Blackburn, where his body was buried.

7:00pm Saturday 11th November 2006

By Charlotte Bradshaw

Backtrack URL: http://www.burnleycitizen.co.uk/news/newsheadlines/display.var.1017979.0.bubble_baby_loses_battle_for_life.php

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