In May of 2000 i went to Scarborough Hospital for a routine scan on my third baby. i am small, and at twenty weeks was already heavily pregnant. The nurse put down the scanning instrument and looked at me. 'there is something wrong with the baby's heart,' she said, and went to fetch a doctor. While i waited, i stared at the ceiling tiles and air vents above me, hoping desperately that it was a hole in the heart, which i knew was fixable. When the doctor arrived he told me gravely that he could not see half of the heart, including the Pulmonary Artery. he referred me to the LGI, on the following Monday. it was a Thursday.
In Leeds, Dr Gibbs used a higher- powered scan on me. The baby's heart had developed wrongly. It was just one of those things. The condition was called Pulmonary Artresia, and the artery was blocked. Currently, my body was pumping blood around my baby's body, but after birth, or during the pregnancy if matters worsened, he would go into heart failure. the prognosis was fairly grim, but Dr Gibbs was upbeat and reassuring. He had seen many many cases, and fitted shunts to bypass the area in many children. Due to his attitude i felt able to go on and try to bring the baby to term.
i gave birth in the LGI. A scan shortly afterwards showed that the artery was not fully blocked, but narrowed- a stenosis. A successful procedure was carried out to open the vessel. Unfortunately, soon after, my son collapsed, and was taken to Intensive Care, where he remained for two months, and a third on Ward Ten. During this time he suffered lung, kidney and liver failure, and a serious bowel condition. He was treated by specialists from the LGI and Jimmy's: doctors, nurses, anaesthetists worked tirelessly for this tiny, bloated little person whose chances of survival were given, twice, at less than 20%.
At this time i had two other children below the age of six. Parents and in-laws could only help for so long, and the children's father had to go back to work- his employer even tried to make the second, post-paternity week we were sat at his bedside in ICU, a week of unpaid leave. i visited at weekends, and on a Tuesday evening, when i would take the train from the coast into the city, and walk up to the hospital in the dark, never knowing what i would find. The parent's accommodation was sparse, but it was free, and allowed me to stay overnight. It was a lonely and frightening 3 months, but eventually, in February 2001, i took Fran home, with his medicines, and his feeding tube and his physio regime. If i panicked, i called ward 10, and they advised me. 'It was a one in a million heart condition,' Dr Gibbs told me, toward the end of his stay in ICU, 'and a one in a million collapse. And this is a one in a million recovery.'
The Current Government is trying to reduce the number of heart centres from 11 to 6. Of all four options, only one keeps open Ward 10 at the LGI. Services would be moved to Newcastle, Birmingham and Liverpool. Children who are fighting for their lives will have their fragile health further compromised by having to travel hundreds of miles further. Trips that may, at best compromise them to a critical degree, and at worst kill them. The strain this will put on their families, already shocked and frightened by a child's illness, is unimaginable. Siblings will be left behind, mothers and fathers torn between their homes, and obligations and a sick child, hours and hours away. There is not 'another hospital up the road' as there is in London, and nor do they have money for childcare or for accommodation over an indeterminate period- which will probably be the hardest time of their lives, when they need their friends, and family- their support network, some normality. Please help to keep Ward 10 open- you can e mail your MP. Ask he or she to support the Early Day Motion 1459 tabled by Hilary Benn calling on the government to keep the unit open. Remember to add your full name and address so that they know you are a constituent. Alternatively, e-mail Cameron directly (http:// www.number10.gov.uk/footer/contact-us) and let him know how you feel about his latest attack on the most vulnerable and needy among us.
You don't live in the affected area, you don't have a child with a heart condition- but you know some one who does- You know Me, some of you know my son, Fran. Children with health problems should not be 'ranked' according to where they were born, or where their parents live, but have equal access to the highest quality care everywhere in the country.
'I don't ever remember writing on a baby's chart, before, recovering from multi-organ failure,' Once was enough for me and my family.
A One in a Million recovery, a One in a Million child: for the chance that therewill be more like him in the future, help save this One in a Million Heart Unit.
