Of the last few months, my blogging status has been utterly AWOL. Life and lack of inspiration got in the way, but with the impending World Prematurity Day I knew I meant to restart recording our story and especially on 17th November to join in sharing awareness with thousands of people about prematurity and the effects of it and how important it is to increase both neonatal and antenatal care. There is a common misconception that prematurity just means small, that is is an event which you leave behind and that children born preterm easily catch up.
Then 12 days ago our life took another rocking which has sharply brought into focus just how important this whole question of prematurity is, even in a medically advanced and developed country. Wriggles was born just under 28 weeks and is now 3 years old. She has lasting effects of prematurity but nothing severe especially compared to some children.
Two weeks ago she caught a cold and became rather snuffly. Nothing out of the ordinary, small children in this season are riddled with colds up and down the country. However it soon became apparent that as with previous times, Wriggles' below average lungs were not holding up brilliantly. We trundled into the hospital where we have open access, sat around for a few hours to be observed and left in time for the fireworks clutching antibiotics just in case. Through the night I grew more uneasy and by morning she was sucking in under her ribs to breathe. I rang the ward again to say we were coming in as I was concerned and so off we went again. On admission it was determined her oxygen levels were dangerously low and we were swiftly transferred to a side room for emergency treatment. Unfortunately she continued to deteriorate despite huge amounts of oxygen and other treatments and by dinner time we were transferred up to Intensive Care and she was put on a ventilator the following morning which she stayed on for 7 days. We stayed in intensive care for 11 days and are currently still in hospital, newly transferred to a specialist respiratory ward still on high pressure humidified oxygen. The isolated virus, RSV is notoriously nasty for premature children. It can be bad news for any young children, particularly babies but for those of us with premature children with chronic lung disease it can be very dangerous. As we found out. As a higher risk baby and one who had required home oxygen for a time, Wriggles received monthly vaccinations against the virus for her first two winters and for protection we cut down heavily on socialising during the season to avoid catching infections. This year, the respiratory team were delighted with her health and having grown to the grand age of 3, the risk factor was considerably lower than previously. Except of course, it wasn't. Because 3 years on, my beautiful daughter has still not recovered strength to effectively fight off such infections and instead had to fight for her life.
During the period we were on intensive care, an alarming percentage of the inpatients were those born prematurely. Some still tiny babies and some like us, who had hoped to have put our prematurity largely behind us. From fleeting visits to those who are longer term inpatients, it was a very stark reminder that prematurity is not just confined to special care units and baby days but is a very real and very scary condition that can impact throughout childhood and for some, into adulthood. It is easy to read the numbers and statistics but faced with a room full of desperate parents keeping vigil by their critically ill children it is hard for it to sink in why healthcare is not finding answers to preterm birth quick enough.