On Sunday 27th November 2011, at only 30 weeks, Reuben & Merryn were born weighing 3lb 7oz and 3lb 2oz respectively, a healthy weight we thought and things would be okay. But our lives were about to change that night and our world, totally fell apart.
Both our tiny babies were rushed to the neonatal unit straight from birth; Reuben was very poorly and needed to be ventilated as he wasn’t breathing correctly. Merryn just a tiny dot was doing a little better.
As soon as we saw Merryn, we immediately suspected that she had Down syndrome. There had been causes for concern throughout the pregnancy that only we seemed to have picked up on. We raised this with the Consultant in the neonatal unit and were reassured by him she hadn’t, much to our relief. 24 hours later we were told that there was another consultant, who was not convinced about this visual assessment for Merryn and the test would be required. 24 hrs after that we got the dreaded “please come to the little meeting room request”. The test indeed showed that Merryn had Down syndrome. From that day onwards our little teeny Merryn turned into the biggest drama queen the neonatal unit had ever seen, with constant recurrent episodes of profound apnoea and needing regular heart scans ensuring our heart strings were well and truly being pulled and she was coming home with us and no one else. 14 weeks of life on the neonatal rollercoaster followed, always on a knife edge.
My wife then started to suspect something was not quite right with Reuben, as on her daily visits to the neonatal unit Merryn would disco dance all day long, whereas Reuben despite an active start, would lie there, very still and wide eyed, just gazing. Christmas and New Year passed and in early January Reuben was given a date to return home. On a routine exit brain scan the day before we were taking Reuben home, a bleed on the brain had been identified where the brain had collapsed into pockets of cysts. For a second time in 6 weeks, we were called away to the little meeting room. The visual damage shown by the scan was in the moderate category but he was likely to develop cerebral palsy to some degree, which would limit his mobility and delay his development.
So we were faced with not just one disabled child but both, combined with the fact my wife (Michelle) had suffered a stroke in her late twenties leaving her the use of her right arm only and reduced mobility, the news was devastating for us and for our family and friends around us. We cried until no more tears could be cried, we felt scared and unsure what the future would hold for our beautiful twins. All the preparations seemed wasted….?
Sadly our heartache didn’t finish there with Reuben being discharged from hospital earlier than Merryn, we then had 3 emergencies with the Ambulance being called and him being rushed back into hospital, the first time with viral meningitis, to which he turned blue and stopped breathing at home, the second with bronchiolitis, again reduced oxygen turning him dusky and the third with a collapsed lung. Michelle would then spend the morning with Reuben in Children’s Intensive care and the afternoons with Merryn on the Neonatal unit of the Leicester Royal Infirmary. Life was exhausting….
In March 2012 we finally got both of the twins home, a happy time for having made it through the worst 3 months of our lives, but now came the hardest part of all, in accepting what life was now going to be like and the long journey of finding out how the twins would develop. It was at this point that we were introduced to Steps. Straight away the help, emotional support and expertise provided, really started to put things into some sort of perspective. Equally as important is the social aspect of steps in meeting other parents and their children who have also been through similar events.
Subsequently Reuben went on to develop an epilepsy syndrome called West Syndrome and has been diagnosed with significant visual impairment, all within his first year of life. Poor little chap, I would love to tell you `he just gets on with it’ but unfortunately, he does do a lot of moaning and screaming at us all, but we have to except it’s his only way of communicating. It’s very difficult to manage him but when he does give you a kick of his legs with a smile and a giggle; it really lifts us to keep on going. My wife’s life now is dedicated to Reuben & Merryn and our eldest son Finlay as their full time career. This mainly involves taking the twins to hospital and therapy appointments including Steps Conductive Education.
Reuben & Merryn enjoy attending their weekly sessions at Steps. For over a year now and it has been the perfect choice and we have noticed great progress and improvement in both of the twins, we feel very privileged for this. The activities are fun, even though they are challenging for them and involve all the necessary movements to promote development. Michelle has never looked back since attending Steps, the staff and other parents have been a tremendous support through our journey so far to which we are very grateful. Steps is unique and perfect for finding the positives in our special children, and somewhere that should always exist for families like ours that would be lost without their support.
Steps has helped change our lives for the better. Thank you.