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Mum`s anguish as baby dies from rare illness

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2.8 from 52 votes
Sunday, June 01, 2008

Baby Savanna weighed only 4lb 11oz when she was born at York Hospital on September 23 last year with the extremely rare genetic disorder, but throughout her short life she never stopped fighting.

And that`s how her young mum Shian Roe, 20, from Fourth Avenue, Heworth in York, wants her daughter to be remembered.

"Savanna was a remarkable baby, she touched everybody`s hearts and I want everybody to know what a little fighter she was," said Shian.

"I think in the end, she`d just had enough.

"I know every mum says their baby is unique, but Savanna really was and doctors have said if another case is found like hers it will be known as Savanna`s Syndrome."

When Savanna was born by emergency caesarean section at York Hospital, she had to be resuscitated by doctors who whisked her away to the Special Care Baby Unit.

It was three hours before Shian got to see her daughter, and then it was only a photo.

"I just thought she was so beautiful, it had all been worth it," said Shian, who has two other daughters - four-year-old, Jordanna, and two-year-old Lilly-Ann.

Savanna was born with three holes in the heart and water on the brain caused by a genetic defect. A specialist geneticist was called in from Leeds to help to give the family a clearer picture of Savanna`s prognosis, but the only other two similar cases found were in America.

Savanna had to be fed through a tube straight into her stomach, which meant she couldn`t put on weight properly.

Shian said: "She came home and she`d been fitted with a nasal-gastric tube, because she was having difficulty feeding, but she was just like a normal baby, keeping me up at night.

"I had her at home for three months, but she got a chest infection, and one afternoon I noticed her lips were going blue.

"We took her to hospital, the consultant took a look at her and he never said anything, her just picked her up and ran down the ward. Everything happened so fast, I didn`t know what was happening."

Doctors were concerned about the amount of oxygen in Savanna`s blood and she went to a Leeds hospital for treatment before being brought back to the Special Care Baby Unit at York. She later got a final chest infection and doctors told her mother she was looking at "48 hours maximum."

Savanna died on April 1. More than 200 mourners attended her funeral at St Denys` Church, Walmgate, last Wednesday, watching as her tiny white coffin arrived in a glass-sided carriage pulled by two white horses.

All the mourners wore something pink as a mark of celebration of Savanna`s short life.

The Rev Allan Hughes, who led the service, said: "Even though Savanna was tiny she was brave and a fighter and she brightened people`s days. She was born in innocence and she died in innocence so her place in heaven is guaranteed."

Faulty chromosomes blamed for disorder

Dr Indie Thopte, Savanna`s consultant paediatrician at York Hospital, who treated her throughout her short life said she had a problem with her chromosome number 6.

"We all have 23 pairs of chromosomes and a bit of her No 6 chromosome was missing and there was an extra part somewhere else," he said. "This is known as partial deletion/duplication. It is extremely rare to get both the deletion and the duplication occurring at the same time.

"We got her to see a geneticist from Leeds, Dr Chris Bennett, who runs a clinic in York because we were struggling to identify the problem.

"Dr Bennett had never seen the condition either, neither had any of the other consultants here. It was a life-limiting condition which meant Savanna had very poor weight gain - even at six months she was still a similar weight to a newborn baby."

Shian`s pledge to help

Shian Roe wants to raise money for Martin House Hospice and York Hospital`s Special Care Baby Unit.

Martin House, at Boston Spa, is for children and young people, and works with over 300 families each year who have a child or young person with a life-limiting condition.

Shian and all three of her children took a break at the hospice and spent the night of Savanna`s death there. Family and friends have already raised £400 by doing a charity run and the family held a collection at the funeral.

Copyright 2001-2007 Newsquest Media Group

 

Author: By Haydn Lewis
Source: The Press
2.80769230769
2.8 from 52 votes
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