The Whelan’s on life with a baby who has Down’s Syndrome:
‘When I look at my baby boy – as he beams up at me in the morning or giggles when we’re playing – I couldn’t imagine our life being any other way. I am so grateful for my life now and am so thankful I have a beautiful little boy who adores me and who I adore with all my heart. But that’s not how I felt when he was first born…
In May 2010, I married my wonderful husband. We’d always wanted children, so when I fell pregnant on our honeymoon, it all felt so perfect. My pregnancy went well and my 12-week scan was fine. Doctors found a cyst on the baby’s brain at the 20-week scan, but we were reassured the cyst would go and, by 30 weeks, it had vanished.
I gave birth naturally, at 6.37am on 10 February 2011, to a lovely baby boy we named Joshua, and for the first few hours, it was the happiest time of our lives.
But 10 hours later, Joshua was having trouble breathing and was whisked off to special care. Shortly afterwards, the happiest day of our lives turned into the saddest when doctors told us they thought Joshua had Down’s Syndrome. It was a complete shock. My nuchal fold test at 12 weeks (that tests for Down’s) was low risk. They said afterwards we were that very rare one in 12,000 – I couldn’t get my head around what they were telling us and thought they must be wrong. I literally felt my world had ended.
Joshua stayed in hospital for two weeks having further tests. We visited him every day, but in my darkest moments I didn’t want to take him home. I was grieving for the baby I expected to have, and now had to adjust to the one that was here.
I will always be grateful to everyone who helped us through that difficult period. They all fell in love with Joshua, promising we would never be alone on this journey; lending me their hearts while mine was breaking. My relationship with Dax suffered in those early days. It’s made us stronger now, but at first, we were dealing with things very differently. He just carried on and didn’t want to talk about it, whereas I wanted to talk constantly.
We spoke to Mencap [a charity for people with learning disabilities], and the Down’s Syndrome Association, and I found an online forum I could relate to; little by little, things improved. But what has helped me more than anything has been going to a local monthly Down’s support group. Speaking to other mothers who’d been through the same experience has helped me so much.
Gradually the moments of joy begin to outweigh all the worry. Along with going to a playgroup at a centre for children with additional needs, I also started taking Josh to Baby Sensory classes and a swimming club – he’s a real water baby and it’s wonderful watching the joy on his face when he’s splashing around. We are doing all the things I worried we wouldn’t be able to do.
But more than anything, it was falling in love with my baby and just giving it time that has helped me get to a stronger place. Both Dax and I love, accept and adore Josh. He is such a lovely, happy little boy with a smile that melts my heart, who was meant to be here with us and we were meant to be here for him.
Josh is sitting up now and is nearly crawling; he gets from one side of the room to the other in his own special way – he has hypotonia [low muscle tone] and has help from a physiotherapist. I used to spend a lot of time worrying about when he would reach each stage – walk, talk, ride a bike – and I still get the occasional pang when I see other babies doing things so easily. But I have to become more relaxed about the fact he will develop at his own pace and have thrown away the books with typical milestones. I do worry about his speech and communication in the future, but Joshua has already been referred to a speech and language therapist and I am going to do a Sing and Sign course to help me learn signs to communicate with him.
I look back at those early days now with regret for the sadness we felt, but relief that we made it through the fear. I also accept I will never be the same person I was before I had Joshua, but he’s made me a better person and I have met some truly amazing people on this journey so far. I’ve been incredibly moved by most people’s acceptance of Joshua. That’s all you want really, for people to pay attention to the child, the person, the soul – not just focus on the disability.
We also have something else exciting to look forward to – another baby – a girl! I had a CVS test [chorionic vilus sampling, an antenatal diagnostic test which detects chromosomal abnormalities such as Down’s Syndrome] when I was 12 weeks pregnant, as we didn’t want any surprises this time. I know Joshua will be a fantastic big brother. Dax and I are very proud of Joshua and for everything he has achieved in the last year. Everyone has fallen in love with him and he is bringing us all so much joy and happiness.‘
National Downs Syndrome Awareness Week (21-27 March 2012)
Down’s Syndrome affects around one in 1,000 babies born in the UK – about 750 babies a year – and is the most common inherited cause of learning disability. It’s not possible to prevent Down’s, but it is possible to identify during pregnancy the likely risk that a baby is affected. The NHS Fetal Anomaly Screening Programme (FASP), ideally done during the first trimester, uses a combination of tests to screen for the level of risk that a baby has Down’s Syndrome. These combine blood tests and a nuchal translucency scan which measures the space between the spine and the nape of the baby’s neck – babies with Down’s Syndrome tend to have more fluid than most. Women who are found to be at a higher risk of having a baby with Down’s Syndrome are offered prenatal diagnostic tests, an amniocentesis or chorionic vilus sampling (CVS), which involve taking samples of the fluid around the unborn baby or some of the cells from the placenta. These provide a definitive answer, but are invasive and carry a 1% risk of miscarriage. For more information and support on antenatal screening and the testing process, visit arc-uk.org. For more information on Down’s Syndrome, visit downs-syndrome.org.uk.