“Bronagh are we looking at something serious here?” “Well Pet the Paediatrician is on his way and we’ll know better then” Why did Bronagh (the midwife) keep asking me did our new baby look like anyone? Why did she keep coming back saying things like she’s a little bit swollen round her tummy, she’s having difficulty breathing. Why was she taken to an incubator the minute she was born? Why was she going to Special Care baby unit?
The Paediatrician arrived and stood at the side of my bed looked over at Martin and said “we’re looking at Down Syndrome here” I looked blankly at him as if he had said it is a nice day and then looked at Martin thinking I had heard him wrong – I said “WHAT” and he repeated what he said but why? How? When? Who is going to look after her when we die I said? He walked around the bed to Martin and put his arm around him as Martin had started to cry I was too numb to cry how could this be happening? What did we ever do to deserve this? How will we cope with this baby? Will she be able to walk, talk, interact, have an independent life? I had so many questions in my head but no words would come out? I started to cry, sob, Dr Aljarad was very kind and said we have to do some tests to confirm it is Downs Syndrome, I asked him again who is going to look after her when we die? He asked had we any other children and I said yes three and he said well who is going to look after them? – You cannot think like this you have to work a little extra with children with Downs Syndrome spend a little more time teaching them things but depending on how you treat her will determine whether she will lead an independent life, like every child the more you put in the more you get out.
I have gone over that whole scenario in my mind so many times since Rachael was born and am so glad we had and indeed still have Dr Aljarad as her Paediatrician and had the brilliant back up and support of all the midwifes nurses gynaecologists, and the dietician in Daisy Hill Special Care Baby Unit and Hospital. She had to have two blood transfusions spent eight weeks in Special Care and had three trips to the Royal Hospital in Belfast to check her heart where again she got first class service. She was on heart medication for 8 months and initially we thought she would have to have a heart operation but thankfully that didn’t happen. She came home tube fed and underweight but has never been a minute’s bother since coming home and indeed has thrived. She has always been treated just the same as her siblings and indeed by her siblings and gets an odd knock down when they are running past or playing with her. She is adored by them and vice versa. Downs syndrome meant that Rachael was slower drinking her bottle slower eating solids and slower walking (because of low muscle tone) but we have done basic stimulation course with a private psychologist,, yoga and reflexology with her since she was born and these have definitely paid off – basic stimulation to help her with fine, gross communication skills, yoga to help her with constipation again due to poor muscle tone and reflexology to help her keep her chest ears and throat clear.
We thought we would get the same excellent care and back up that we received in Daisy Hill when we arrived home with Rachael but soon found out that there is a lack of essential services like speech therapy, occupational therapy, physiotherapy, regular hearing and eye tests and even though there is an early intervention team there is no set programme in place due to lack of funding, lack of concern on the part of the government etc. A group of us decided to set up a support group called SNAP Special Needs Active Parents in November 2004 and since then we have lobbied the Health Service Executive and the Minister for Health to provide essential services for our children but to no avail yet. We have organised events for the children like swimming, Christmas parties, Easter egg hunts, and playschool and have fundraised for these with sponsored walks, table quizzes etc. We have found great support in each other and have a strategic plan in place for the months and indeed years ahead. We want our children and indeed newborn special needs children to be treated as first class citizens and have essential services from birth so that they can reach their full potential. SNAP have also organised for Dr Vincent Moloney Psychologist to run a basic stimulation programme every six weeks for our children.
Downs Syndrome Irl also provides a home teacher 1hour a fortnight after the child is 1 year old and she comes to the house and goes through different activities with Rachael to improve gross, and fine motor skills, pre maths activities, speech, computer work etc. Down Syndrome also has lectures and seminars with different topics, which are of great benefit to our children.
Someone asked us last week do we worry about when she is older and both of us said at the same time No, not now – we know she will be independent and hopefully have a great life just like her siblings I wish somebody could have told me then how I would feel now three years on– the old saying is very true – time is a great healer.