Children of St Mary’s Intensive Care is a charity which my family and I support. All of my children have just walked 5K through Kensington and Hyde Park to raise money for equipment. St Mary’s Hospital in Paddington is where the high dependency pediatrics unit is based. The tireless dedication of this team saved my son’s life at six weeks of age. I am eternally grateful. Some families were walking in memory of their Loved one’s.
Twelve days before christmas in 2003 I went to my sons cot early evening, he was a grey/blue tinged with yellow colour and strangely floppy. Like death. Previously on three occasions I had taken him to the doctors along with his twin sister. They were five weeks premature and had up to this point (although small at 4 lb 8oz and 5 lb 4oz) been healthy, however in the fourth week of their little lives they began to snuffle, then the snuffles began to get worse and then my little boy began to make extended grunting noises. They were both still breast-feeding little and often, but I was more than concerned and went to my local surgery three times. On each occasion my babies were examined and each time I was treated like an over-protective new mother (even though I had two other children) and told that if my babies were still feeding then they were fine and that I should come back if they stopped feeding.
I dialled 999 and blew on my baby’s face, I told him how much I Loved Him. I spoke to him gently and constantly and willed him to ‘stay with mummy, stay with mummy’, I kept blowing on him. He was only a little present, but very very distant. The ambulance came and blue-lighted us to the local hospital, where the amazing doctors battled to get a line into him. Over the next ten days from this point, time would become timeless. I clearly remember the doctors calmly working to save my child’s life whilst this wild woman under the influence of drugs went ballistic in the casualty bay. It took 3 security guards to tackle her to the ground in order to secure her and us all. I had my other poorly twin in my arms. It was very frightening. Bless the doctors who just ignored her and carried on quietly working away.
They decided (although at full capacity and sending sick children away) to take us in. For us it was a matter of life and death. We were told that our child was a very sick little baby and that just moving him from casualty over to the special care baby unit was a necessity which could prove fatal. They were to transport him on a bed and the ward sister would pick him up into her arms and run in the ultimate emergency. It was terrifying. We went down several corridors and through several double doors and several minutes later arrived at S.C.B.U.
My baby boy had a full blood transfusion. They shut down his whole body with morphine to stop his heart from beating to fast, as it was working too hard. If I remember rightly it was about 200 beats per minute. The special care nurse then used a hand-held pump to keep him breathing, until St Mary’s hospital Paddington had phoned our hospital back with the correct settings for the ventilator machine to take over. You have to have the correct settings according to the baby’s age and weight. The machine was a temporary measure until St Mary’s hospital could send a specialist team to our hospital to stabilise and then transport my child to the London life support unit.
The team came, they worked through the middle of the night trying to stabilise my son and all this time they worked quickly, quietly, calmly and with great authority and efficiency. All I could do was to stroke my baby’s skin a few times, and be near. Some of the time I had to stand outside the room as the team needed full access. After 8 hours he had been put into a glass pod and was heading off in an ambulance to London Paddington. We were realistically told he may not make the journey. I could not go with him as I was still breast-feeding his twin who was also poorly and was put onto intravenous antibiotics at this hospital. We decided my husband should stay with me in case we were to receive the worst news. We had to make such instant and difficult decisions. My son was now breathing with the aid of a ventilator and was being accompanied by one of the best teams in the country to the London P.I.C.Unit, although he was unconscious.
My child had one fully and one partially collapsed lung, he had pneumonia caused by bronchilitis, caused by R.S.V virus. A respiratory virus, which in most 1-year-olds would just present itself as a bad cold, but undiagnosed and left untreated in a tiny baby (usually pre-term ones) can be fatal. Every day I tried to express some breast milk and every day my husband took it by train to London. By the Wednesday evening they had done everything they possibly could for my son. We were told he may or may not make it through the night, we were told he most definitely would have died if it were not for breast-feeding. We were also told that at this critical stage usually little girls were stronger and that little boys usually gave up fighting. I remember, for the next ten days, every time a nurse knocked on my bedroom door, I thought they were coming to tell me the worst had happened.
On one of the days I went by train to visit my son, when I saw him, it was as if it were somebody else’s child, he had oedema and his body was swollen to what looked like double his size, he was unrecognisable. There was so much equipment around him, monitors, breathing apparatus, lines, tubes. It was so petrifying. They had tried turning down the breathing equipment and he couldn’t respond and so it was turned up fully again. I was distraught. By instinct I learnt very quickly the deepness of prayer, not prayer with the intellect or the mind. But prayer with the whole of my being. Prayer that I eventually exceeded till there were nothing else. Beyond prayer, beyond faith.
On christmas eve 2003 my babies came home. No monitors, no lines, no alarms, no doctors or nurses, no medicine. I was petrified. We were told the same virus could possibly occur again within two years of their life. I don’t remember much about that christmas we were in solitary confinement. The very worst christmas, but with the most precious gifts ever. Christmas where God became my saviour.
The amazing birth of our babies
Reliant on the warmth of my breast
Premature but perfectly tiny
So precious is life over death
The beautiful breath of our baby
Cupped in the palm of my hands
Precious life kisses his body
Nobody but us understands
How lucky we are.
To watch a short 6 minute clip and to find out more about C.O.S.M.I.C (children of St Mary’s intensive care) or to make a donation to help some of the sickest children in the country, please click on the link.