Tommy's guest blog by Diana 16/09/17
Alastair has just turned 15. He is now taller than me. He’s never going to win a football game – but his eye for detail is fantastic. Since he could hold a pencil his drawings have been better than mine! His other passion is graphic communication and he has just started designing publicity for the local basketball team. But I still remember the day he was born with utmost clarity.
My two aunts happened to be staying with us that weekend (18th Aug 2002). I was 28 weeks pregnant and had a few spots of bleeding that morning. ‘Could you take my 11 month old son to church while my husband and I get this checked out? Nothing to worry about. Same thing happened with my last pregnancy. I’ll be back by lunchtime.’
By lunchtime the doctor had said ‘definitive steps will have to be taken’. What did that mean? I laughed in disbelief as I was wheeled into theatre. I was in no way prepared for what was about to happen.
I came round to the sensation of my bed being pushed along corridors. ‘This is your son. We’re taking him to Stirling hospital as we cannot care for babies of this age in Falkirk.’ I tried to sit up to peer into the incubator. I was pushed down. ‘What are you doing? You’ve just come from surgery!’.
A photo of him was propped up beside my bed. I was too weak to be aware of much else. I had to stay in Falkirk. I had been given 4 pints of blood that day. I was given 2 more the next day. Abandoned in my little room, I felt nothing except a sense of encompassing loneliness.
Three days later I was taking the bumpiest ambulance ride ever to join my son. As I entered SCBU I was overwhelmed. So many lights, wires and big machines. Where were the beds in this ward? It dawned on me that the miniature patients were all housed in incubators. I was wheeled to one.
There was a ventilator over the tiny face and wires leading to feet and belly button. What were they for? How was I to bond with this scrawny bundle? I felt a chasm between us. I couldn’t feed him. I couldn’t cuddle him.
I was shown how I could put my hands through the two flaps in the side of incubator to encase his body between my hands. It was explained that he was fed and monitored through the wires. I was to stay in Stirling while I got stronger and learned to care for him here.
My husband Sandy came to see me. ‘We need to name our baby.’ He spoke with urgency. He had waited in a corridor for hours during the birth and since then had been caring for our first son while running between 2 hospitals. No wonder he looked awful. The medical staff were amazing. They were gentle as they explained each new process to us. Unborn babies are protected in a bubble of fluid: in SCBU the babies had to be turned every 4 hours to prevent tissue damage. A pregnant mother automatically meets her baby’s feeding requirements. To gauge these accurately in the ward, bloods needed to be taken every 4 hours. Finding such a tiny vein wasn’t an easy process and involved anxious waiting time. Parents were sent away. Hygiene standards were impeccable for any infection could be fatal. Our boy was a good birth weight (3 lb 5oz) for his age so he had been given high chance of survival: 80% did not feel high enough to us.
It was such an anxious time, people were unsure what to say to us. I distinctly remember receiving our first tentative Congratulations card. It jolted me into realising that we did have something to celebrate.
Each improvement became a marker to be thankful for. Alastair John* came off the ventilator after 7 days : but what a cautious celebration that was – we knew through speaking to other parents that it could just as easily go back on if he caught an infection. Which he did. Twice. Our hopes and fears for life and death rose and fell with each one.
Another celebration came the first time I fed Sasha* myself. I had been expressing milk to build up a bank for him as he got stronger. What an achievement to fill a 0.5ml syringe and press the plunger, watching as my milk ran down the tube through his nose into his tiny stomach. Meanwhile the stress had got to Sandy, who contracted pneumonia and had to have 2 ½ months off work. Usually a strong man, Sandy was now too weak to climb the stairs in our house. I couldn’t drive. We were totally reliant on friends and family.
After a few weeks Sasha was moved out of an incubator – another celebration: now he could control his own temperature and he was out of the worst danger. Sasha came home on 27th October, 2 weeks before his due date, after 10 weeks in hospital. The following months continued to be a blur as we went on the rollercoaster of our lives …
I distinctly remember a friend asking me what I wanted for Christmas. I replied immediately. ‘A smile from Sasha’. We were started to feel drained that all the love and hard work we were pouring into him seemed to be going unrequited. Amazingly, my wish was granted: Sasha smiled his first smile - on Christmas day!
By his first birthday, Sasha was still unable to sit. He began to get weekly physiotherapy. Truncal ataxia was diagnosed and there were concerns about whether he would be able to walk. These were anxious times, once again we urged all our friends to pray. Incredibly in February 2004 a miracle occurred: Sasha broke through several milestones in 1 week. The physiotherapist was mystified. ‘This can only be an act of God’ she said. Although trailing behind his peers, Sasha took his first steps just before his second birthday.
By nursery age we became concerned that Sasha wasn’t hearing properly. He began a series of hearing tests and was found to have glue ear: such small tubes that they kept getting blocked. Luckily this is something children grow out of. We had the choice between an operation to insert grommets or hearing aids. We chose the latter, so Sasha wore bright blue spotty hearing aids for the first 2 years of his school life!
I can hardly believe how we got through those early years now – especially when I became pregnant again in early 2004! I know we couldn’t have survived without the help and support of wonderful friends and family. We give thanks to God for all the support we received during those months and for our miracle boy.
*For the first 3 years of his life we called Alastair ‘Sasha’ as we felt he was too small for his name!
Lewis writes about his journey and why he chooses to run for #TeamTommys.
There are times when it all feels like too much, but at those times I think of my daughter, who was such a fighter, and suddenly everything seems more manageable again.
"I truly feel without the support of the EPU and the peace of mind given to us through the Tommy's study we would not be where we are today."
Little Anderson was born under the care of the Tommy's Early Miscarriage Research Centre at London Imperial.