Down Syndrome team ‘scoops up and carries you’ says mum | Latest news

The parents of a three-year-old boy with Down Syndrome have praised a Nottingham clinic that “scoops you up and carries you” from the moment of diagnosis.

Today (Friday 21 March) is World Down Syndrome Day and the theme this year is Improve our Support Systems.

Amelia and Johnathan McGuigan are just one of the hundreds of families the Down Syndrome Clinic – run by Nottingham University Hospitals NHS Trust (NUH) – has supported over the 40 years since its launch.

“The instant support the team gives you makes such a huge difference,” said Amelia. “Because until you have a child with Down Syndrome, or know someone who does, you don’t have any experience.”

Amelia was identified as a high risk in her 12-week scan and offered further testing. At 15 weeks she was told that their baby had a one in 17 chance of having Down Syndrome and faced a difficult and emotional decision about whether to continue with the pregnancy. Amelia immediately threw herself into research.

“I wanted to understand what it might mean for our family. Is it this going to be as challenging as I feel or is the reality different? I couldn't find the negative. It's different, yes, but not negative.”

The couple – who already had six-year-old Eliza - decided to continue and were put in touch with the NUH team. Amelia said: “The team were very neutral, and gave us a comprehensive, balanced explanation of what we could expect. Dr Liz Marder – the consultant paediatrician – said ‘don’t worry, we’re here for you.’ That care and support kicked in straight away before I even gave birth.”

August is now a happy, fun, thriving big brother to seven-month-old Theodora. He attends Willow Pre-school in West Bridgford with neurotypical children, and Footprints Conductive Education Centre, and uses Makaton brilliantly.

Ash and Dan McKay – parents to 18-month-old Merryn – echoed the importance of that support being offered so early on.

Ash said: “When a baby with additional needs is born, parents can feel very mixed emotions and are often bombarded with information about risk and the difficulties their child is likely to face. Our experience wasn’t this. I believe that our generally positive experience of health professionals has been down to the hard work of the NUH clinic and the Nottinghamshire Down Syndrome Support Group (NDSSG), along with the national promotion and education through groups like Positive About Down Syndrome (PADS).”

The NUH clinic uses a multi-disciplinary approach towards the child’s care, with speech and language therapists, physiotherapists, orthotics, paediatricians, play therapists, etc. They also link families up with the NDSSG.

Ash said: “Many of our children have additional health needs, and multiple health appointments, particularly in the first few years of life. Given this, this one-stop-shop approach  is so helpful – being able to attend one clinic and see several different professionals on the same day.”

“Merryn is very happy and sociable – she has the most contagious smile, even when she is poorly. She is adored by all those who meet her, especially her two big brothers, Dylan and Arlo. She has to work harder to achieve developmental milestones but she is incredibly determined. She is getting bigger and stronger – and stroppier!

“I always come away from the NUH clinic feeling as though the clinicians have celebrated my daughter and her achievements as well as focusing on areas of challenge.”

Amelia agreed. “The team at the clinic feels very family-like. They know you, your child, your other children. We have a lovely support system - our families love August and have been rock solid too.”

Dr Marder, who is about to retire, said: “Working with children with Down Syndrome and their families has been the highlight of my career. They have helped shape me, how I work as a paediatrician, and have taught me so much about what is important in life.”

“Down Syndrome is like a four-leaf clover – it can happen to anyone,” said Amelia. “Children with Down Syndrome will thrive in any environment - they just need to be included, and their needs met.

“Down Syndrome is different. But it’s not negative. Open your eyes to the difference - it really isn't that scary. August is a joy to be around – we wouldn’t change him for the world.”