About 50% of new-borns with Down syndrome have congenital heart disease. Often, this means surgery while still a baby, but the prognosis in New Zealand is excellent, and the overall risks of this surgery are no different from the general population according to research released last year in the Journal of Congenital Cardiology.  We spoke with Ashley Mills, the Hospital Family Support Co-ordinator for Heart Kids NZ, a fantastic charity that supports whānau throughout the country who have children with congenital and acquired childhood heart conditions, to find out more about their work and heart conditions. Their website is www.heartkids.org.nz  Many NZDSA members know first-hand the amazing work that Heart Kids NZ undertakes every day to ease a challenging journey. 

Where can babies receive heart surgery in New Zealand?
Starship Hospital is the only place in Aotearoa that does cardiac surgery on babies.

What professionals are usually involved in a paediatric heart surgery?
Paediatric cardiologists, surgeons, nurses, anaesthetists, radiologists and possibly some others depending on the circumstances.

Is there more than one kind of heart surgery?
Yes, there are lots of different types. There is open-heart surgery, where the chest is opened and the patient goes onto bypass, and there are other types of heart surgery and cardiac procedures that don’t require open-heart that can be done by cardiac catheterisation.

Your baby having surgery is of course a scary and stressful time for whānau – how do Heart Kids work with families around this time?
We connect with families in the community and/or the hospital, we are there to listen, to inform, to support, to walk alongside them whatever their needs are at the time.
This may mean a home visit before the surgery to help families prepare – with information, practical, emotional, and at times financial support. Or it could be a phone call, or it may mean visits from a hospital Family Support Taituarā (FST) on the wards in Starship who will connect, provide emotional and practical support, provide information, and be a friendly face who can listen and spend time if needed. We take into consideration the whole family as well, siblings for example. We can assist to refer to other agencies or support if this is required.

What can a family expect in the weeks following a surgery?
It really differs from family to family. Some are in hospital for many weeks or months before they can go home or transfer to a hospital closer to home, others will make a quick recovery and be home within days or weeks. Emotionally, we continue to support them during this time, and when they are home in the community Heart Kids NZ FSTs engage and offer support and connection in the local community. 

In hospital after open-heart surgery, there is a pathway: time in PICU immediately after surgery where they will be constantly monitored, the parent cannot stay overnight, then, when ready and stable, they are moved to Ward23 B to the intensive observation room (IOA) and the parent will still sleep elsewhere. Many medical procedures will happen over this time, baby may do well one day then have a setback another, re-establishing feeding can be problematic and take time, sometimes another surgery is needed, other times they progress straightforwardly, move to a single room where the parent can room in and then baby will eventually recover and go home. Families from out of town will sometimes be without their other children or have limited support from a second parent during this time, depending on their circumstances, and COVID-19, so are often quite alone which can be stressful and exhausting. Once they do go home the situation will vary, some can get back to a “normal” life pretty much straight away and others will have longer-term things that need managing.
There will be follow-up appointments, periods of rest and possible isolation, but depending on the surgery and procedure timing will be different for every family. 

What can they expect longer-term – do most babies make a full recovery?
Again it really differs from child to child, depending on the Congential Heart Defect (CHD), what surgeons are able to do and a whole raft of other factors. CHD can never be “fixed” but after some repair surgery e.g. coartation of the aorta or a VSD or ASD closure, many will live a full and normal life with only occasional cardiac check-ups needed or even be eventually discharged from Cardiology services if it’s deemed they no longer require follow up.
Many others will need continual regular monitoring. They may require further surgeries as they get older, others may have frequent check-ups, regular Cardiac Catheter procedures and other interventions to tweak previous surgery or deal with ongoing changes caused by the CHD such as valves repaired or replaced, arteries ballooned, or pacemakers put in.  This may require further trips to Auckland. Some will go years before needing follow up and never need any other intervention. Feeding and trying to gain weight can be an ongoing issue when home awaiting the next surgery. Cardiac babies may get complications if they get something like a cold so this can impact on the family and how isolated they may need to be. I can say that many of them, despite their condition, live life to the fullest and have resilience and attitude that sees them get the most from life!

What is some good advice for parents expecting heart surgery for their little one?
Ask all the questions that you need answers to in order to make yourself feel comfortable – this will vary from parent to parent. Be prepared that things will change and change again, that it’s not always possible to have all the answers beforehand, plans and schedules can change, and taking it day by day is the only way to do it.
Be reassured that we have amazing, dedicated, world-class surgeons in Starship Hospital, and that everyone involved in the team will do their absolute best for your baby.
Ask your friends and whānau for support – and accept it – it can be a long road ahead for some and having support in place can ease some of the stress.

Do you have a number one recommendation for something to bring into the hospital?
Something of comfort for your child like a favourite toy or blanket (or device they can look at in bed to distract).

What other types of support can Heart Kids provide?
All kinds of things! We offer camps, forums, connections in the community with other heart families, education, advocacy, bereavement support, and antenatal support. Our website is a great place for families to find more information, resources, connections, news and heart stories from across Aotearoa:
www.heartkids.org.nz 

 

Reference:
Delany, D.R., Gaydos, S.S., Romeo, D.A. et al. Down syndrome and congenital heart disease: perioperative planning and management. J Congenit Heart Dis 5, 7 (2021).

My name is Renee, and I am 35 years of age. On Saturday, I found out that I got COVID. I felt very sad when I found out that I got COVID. And as soon as I found out, I needed to stay in my room, to protect my mum and family so they don’t get it. It is good that I have a TV in my room because I can watch all my TV programs.  It is also good that I have a phone to video chat and text with all my sisters and brothers.  

The worst thing about having COVID is that it is very boring. Because I am sick at home, I do nothing but rest. I wish I was hanging out with my friends and riding my horse Magic and Kane.  But unfortunately, I had to cancel my RDA (Riding with the Disabled) in Cambridge making me sad not to go horse-riding. I miss all the horses.

I have been eating yoghurt and that helps my sore throat. Also, Mum bought me a cough-lolly (lozenge), which helped my sore throat. I am drinking lots of water, and that is helping. Dad cooked sausages and vegetables last night, and I ate it all. Last night, I went to bed early because COVID made me feel tired. Today is Monday, and my cough is not as bad today.  In my bedroom I have a door so I can go outside and get fresh air which is good and we live in the country so that’s good to have the peace and quiet and no traffic noise.

I got two vaccinations. All my friends should do a COVID test to stay safe. I miss my friend Caitlin from Te Awamutu because I want to hang out when I get better. We have been friends for eight years. Maybe we will go to a movie, have McDonald’s, and have a photo together when I get better. But, for now, I will rest and spend time with my cat Simba.

Colin Bailey continues to be a role model and trailblazer for people with Down syndrome, 40 years after he became New Zealand’s first ever Special Olympics athlete.

A Hutt Valley athlete, Colin, who has attended every Special Olympics National Summer Games since its inception in 1985, has many stories to tell.

In December, Colin will again be attending the Freemasons New Zealand Special Olympics National Summer Games, his tenth games, where he will be competing alongside 1,200 athletes in ten sports across eight venues in Hamilton.

“Colin is an amazing person in his own right, but he holds a very special place in our community,” says Carolyn Young, Chief Executive Officer of Special Olympics New Zealand.

“Colin and the other pioneers showed the way for thousands of athletes who have followed his great example, so we are extremely grateful to him and those supporting him.”

Colin’s Special Olympics journey started in 1982, when he was spotted by visiting American doctor Dottie Fitzgerald. They encouraged the talented young swimmer and his coach Grant Quinn to attend the Special Olympics World Summer Games in Baton Rouge the following year, as well as starting a New Zealand branch.

That fateful meeting changed both of their lives forever, and one year later Quinn, Colin and his three team-mates found themselves on their maiden plane trip to the United States.

Colin, who recently turned 60, says he best remembers the stunned crowd in Louisiana, as the small, but boisterous Kiwi contingent burst into a haka at the closing ceremony.

More importantly, the young swimmer made an even bigger impression in the pool, getting a special tribute from Special Olympics founder Eunice Kennedy Shriver, sister of John F Kennedy, as well as praise from four-time Olympic champion John Naber who could see no flaw in Colin’s impeccable technique.

Colin and his team may have returned with a bagful of medals, however his fondest memories are not from the pool, but from making new friends from all around the world.

 

 

“And that’s what it’s all about for Colin. Having fun and meeting people,”

says Mum, Lee, who has been poolside for longer than she can remember.

Colin continued to attend every National Summer Games since 1985 and has suggested his Mum needs a bigger house for all his trophies and ribbons!

After decades in the pool, Colin swapped his swimming goggles for a ten-pin bowling ball. “I wonder if that was to get away from his Mum, because I was the swimming coordinator,” laughs Lee.

Whether in the pool or the bowling alley, Special Olympics is all about camaraderie, especially for Colin.

While many people with disabilities mingle with peers at school, residential care, or at day activities, Colin worked most of his adult life at Hirepool.

“So Special Olympics was the only way for him to meet his peers and make new friends,” says Lee, who adds that COVID-19 restrictions had been hard on her son, with Special Olympics training on hold for the past six weeks.

Once training resumes, Colin and his Hutt Valley team will start preparing for the National Summer Games in Hamilton, starting on December 8.

“He is not as good in bowling as he was at swimming, but he doesn’t care,” says his mother.  “As long as he has fun and can meet new people.”

 

As the Down syndrome community prepares for the exciting premiere of Down for Love, a show all about people living with Down syndrome who are on a quest for romance, I sat down with the Series Producer – and my sister –  Robyn Paterson.

 

First of all – what is Down for Love?
It’s a TV series that will follow six people living with Down syndrome on their quest for romance. At its heart it’s about diversity, and love. People with Down syndrome need to be treated and respected equally. Our search for love is universal – no matter who we are.

What is your role in the production?
I am the Series Producer which means I oversee the series. I’ve brought a team on board who have been doing an excellent job, and then I supervise it creatively and otherwise. I’m working alongside Dan Buckingham who is the Executive Producer (and also the CEO of Attitude). 

How did you get involved in Attitude yourself?
I’d just moved from Wellington to Auckland having finished work on my feature documentary, Finding Mercy, and was looking to do some directing work up here. I did about a year freelancing for Attitude then worked on some other projects, but always maintained a connection with Attitude. When COVID-19 struck at the start of 2020 I was in the middle of directing an episode. There was a sudden shift for the whole industry – we had to work out how we could carry on      delivering episodes and relevant content under those circumstances. I took on some of that task for Attitude and ended up as Series Producer. When the idea for Down for Love came along, it made sense to take that on too.

What do you like about working for Attitude?
I like the kaupapa of Attitude as a disability-led organisation, and an organisation that puts disability first; putting people in the lead of their own stories as participants rather than telling stories about people living with a disability. When I work in any capacity, I always like what I do to feel like it has meaning and purpose and a positive impact in some way, shape or form. And that can vary – it doesn’t mean I don’t work in forms that are pure entertainment – but it is important to me that what I do has integrity. There’s a purpose in putting it out there into the world. Attitude is a really nice space to work in in that regard because it’s documentary in style, we do full half-hours so there’s time to do good story-telling, and it has value in the community. 

Where did the idea for Down for Love come from?
It was really organic. Robyn Scott-Vincent who runs the company had an idea to do something in the realm of dating, and then the concept developed over time as a collaboration of the creatives involved. We were interested in that universal experience of love and how much everyone needs and desires connection – whether that’s romantic love or close friendship or whatever that may turn out to be. There’s a misconception that those living with an intellectual disability don’t have the same needs or wants or desires, which of course isn’t true. We were looking at doing something that was fun and uplifting, but also educates an audience along the way.

Has COVID-19 been a factor in much of the production?
When the concept was developed, we were focused on Down syndrome specifically because of 2021 coming up and were investigating all kinds of ways we could do content relating to Down syndrome. We also did the ‘T21’ digital series, and we incorporated a considerable amount of Down syndrome content into our 2021 series. Down for Love was the biggest thing we had planned, and it was originally scheduled to air in 2021, but due to COVID-19 that has been pushed back into 2022.

In terms of filming, we were actually really lucky as the vast majority of our filming was done when there was no COVID of any type in the community in New Zealand. We as a country have been incredibly lucky and also had great leadership in that regard and so we’ve been able to live relatively COVID-free for two years while the rest of the world was facing it. We get asked this question a lot by international groups as this was launched at MIPCOM which is the major international market for      television. It’s only our final two episodes that have been filmed during a different phase, post-Omicron, and so we’ve had to look at those really differently.

We film under Screen Safe Red Protocol guidelines, our crew have firm guidelines, and our final dates after the lockdown hiatus have been filmed under strict protocols.

Where did the name Down for Love come from?
We wanted to reference Down syndrome and also describe what the show was in a fun but respectful way. We didn’t want to go with a sensational title like you sometimes see. Attitude is a disability-led organisation and getting language right is really important to us. The title felt appropriate and fun, – many of our participants have described themselves as being “down for love”. 

What’s been the most challenging part of the production so far?
The first episode of any brand new series is always enormously challenging because there’s no template for it. You might have references you’re inspired by, but you’re carving new territory. The team goes out and films and gets certain things, but it’s always in the edit suite of the first episode of a new series that the real work happens. That can be a really challenging process for everyone involved: series producer, director, and editor. There are a lot of things to get right with this one that were really important to us to get right. There’s the balance of being a TV show that has to work for a mainstream television      audience, but it was important to us that it also worked for the community, that it maintained its integrity, that it maintained Attitude’s kaupapa of being disability-led and people in control of their own narrative, and that it had an educational purpose at the same time as being a good show to watch. I would say apart from Omicron that is definitely the most challenging part – the edit of the first episode. We’re incredibly pleased with the result though and how it’s come together. We’re really proud of the show.

How have the community been involved in the process?
NZDSA has been directly involved; they’ve watched episodes and given us feedback and been more actively involved in the consultation process, including helping to find keen participants. Zandra has been amazing, we’ve really valued her input and the consultation with her has been really valuable. We had several good conversations ahead of filming and she was great at talking through things we should be mindful of.

Then there are the many organisations we’ve reached out to far and wide – such as UpsideDowns who’ve been really helpful. Any organisation that’s related to Down syndrome and intellectual disability that we can think of including, private residential organisations, activity-based services, workplaces that employ people with disabilities… We’ve also engaged with the community on social media, which is where the regional DSAs have supported us too with posts and casting calls.

We worked with a lot of Duty-of-Care protocols, as we didn’t want anyone to feel under any undue pressure. Being on camera can be intense and we wanted to make sure people felt comfortable and were able to have these experiences and enjoy them for what they were. So in terms of our timing and how we worked, we always had that in mind. We made counselling available to participants if they should want it either during or after filming. No one’s taken it up yet but it has been made clear that it is on offer. We always make sure that where possible somebody else is with the director so they can be keeping an eye on people’s wellbeing throughout, and we’ve always made sure participants have the choice to travel with a companion: a parent or sibling or friend. So Duty-of-Care has always been a big consideration throughout. 

How do you match the dates? What are you looking for?
This comes down to our wonderful researchers. We’ve had Justin Scott for the first part of the series who also works as a director for the main Attitude series and who directed the T21 digital series. It turns out Justin has excellent match-making instincts which we feel he should capitalise on somehow! For the second part of the series we’ve had Daniella Baldock who’s a fantastic researcher as well, originally from the UK. Both of them have done an amazing job. And then in the later stages I’m involved in that process as well. We pre-interview people on zoom so we’re able to look at those interviews and make decisions from there, and have a chat about who might match well with who. What we’re keen to know is what they’re looking for in a partner, what level of seriousness they’re wanting in a relationship, and what their interests are. Like you would with any matching, that’s what we’re looking for. Also, one of the things I really wanted to look at in this series is what people are doing already in their efforts to connect and find people, and to work with them along those lines as well. So it’s providing a little bit of help more than artificially creating a connection.

We’ve been working New Zealand-wide. We’ve tried to find matches close to home when we can, but it’s not always possible, and sometimes that’s actually led to some really great experiences. For those outside of main centres, it can be harder to meet a wider circle of people.

Not everyone in the show necessarily has Down syndrome is that right?
No. All of our main participants are living with Down syndrome, that’s key as it’s a show that’s based in the world of Down syndrome, but it’s open in terms of people that they date. All of them are living with an intellectual disability but not necessarily Down syndrome. So we have a whole spectrum in there amongst our dates from Global Developmental Delay to Williams’ syndrome and others.

Have there been some successful matches?
There have been more successful matches than we could have imagined! I would say our researcher may have a new career as a matchmaker. Yes, we’ve had a lot of successful matches and a lot of great connections between people even if they haven’t gone on to be a long-term romantic match. That’s all I’ll say!

What do you think the wider public will enjoy the most about watching it?
I think they will enjoy getting to know the people involved. One of the things that was really important to us in doing this show was to show the diversity within Down syndrome. There’s that misconception within disability that people get lumped into categories. You have references to people living with Down syndrome as though that’s just one thing. But of course there’s a huge diversity within Down syndrome just as there is anywhere, and one of the things we wanted to show was different personalities – and that really comes through. There are some amazing people living extraordinary lives and I think that’s the thing we’ve taken the most pleasure in, is really bringing that to the screen and it’s wonderful to watch.

What do you hope comes across to those watching it?
I really hope that people come away with a better understanding of Down syndrome and that they may be more aware of people in their communities living with Down syndrome and other intellectual disabilities – that they may be more cognisant of their rights and needs.
That there are certain things in life that are universal, and we are more similar than we are different.

What will Chat21 readers enjoy about it?
I hope that people within the community will enjoy seeing themselves on screen in a positive way, and will enjoy relating to the people that they do see, and that it might inspire them to follow their own love journeys.

Will there be more than one season?
We very much hope so! We can’t confirm that yet but we’d love to think so     

Finally, why do you think we’ve both ended up working with the Down syndrome community?
I really don’t know, but I would say it’s a wonderful coincidence! 

Image: Robyn Paterson with little sister Sarah Paterson-Hamlin, little brother Keith Paterson, and her nephews, Ezra and Lonan

Down for Love premiered on the 9 May 2022 at 8:30pm on TV2 and will be available to watch on TVNZ on demand.

Breakfast TV’s John Campbell did a wonderful segment for World Down Syndrome Day interviewing Lily Harper and NZDSA National Executive Zandra Vaccarino.

Media release – World Down Syndrome Day highlights barriers to full inclusion

New Zealanders with Down syndrome continue to face unsurmountable barriers stopping them from being fully included in their community.
“The reality for people with Down syndrome in 2022, is that they still face daily battles to fully participate and contribute to society,” says Zandra Vaccarino, the National Executive of the New Zealand Down Syndrome Association (NZDSA).
The global theme for this year’s World Down Syndrome Day (WDSD), on March 21, is #Inclusion Means.
“The theme was chosen to make people consider and understand what full inclusion actually means,” says Vaccarino.
“Inclusion can mean a lot of different things for people with Down syndrome, but also for the people around them. What inclusion looks like should always be considered in the human rights framework and then one should explore how one can be inclusive in all aspects of life including employment, education, sport, arts, community participation and social events.”
Vaccarino says that by signing the UN Convention on the Rights of Persons with Disabilities, New Zealand has obligations to uphold the intent of the UNCRPD but this has not translated into full community participation, or the privileges and rights other Kiwi citizens may take for granted.
“Inclusion is not just having people with Down syndrome present in our schools, our streets or our malls. It means that we need to give them equitable access, so they have real access and support where needed to fully participate in all parts of our society,” says Vaccarino, who hopes that this year’s campaign will encourage New Zealanders to take stock and see how they can better include people with Down syndrome in their schools, work places, sports teams and social events.
This year, Covid 19 restrictions have again stopped Down syndrome groups around the country from hosting their usual WDSD celebrations, so the NZDSA has pulled together a mega-online community event, The Big Connect, which on Monday night will host a who’s-who from the disability sector.
The Big Connect will be opened by the Minister for Disability Issues, the Honourable Carmel Sepuloni, before she hands the stage to the President of Down Syndrome International, Bridget Snedden, and Paula Tesoriero, the Disability Rights Commissioner.
Snedden and Tesoriero will then be part of an intriguing panel of high-profile experts and advocates around human rights, education, employment, sports and arts to discuss the WDSD theme #Inclusion Means.
Vaccarino says that Covid restrictions last year forced the NZDSA to come up with the first Big Connect, which turned out to be a huge success.
“Last year, over 100 families from all over the country joined us and they were all really excited about being connected.
“People with disabilities are often more isolated than others during the pandemic, so we really hope that we get an even bigger turnout this year.”
“We are incredibly proud and grateful to host such an amazing group to share their ideas and experiences around inclusion and we hope the discussion will be an inspiration for people with Down syndrome and the wider community,” says Vaccarino.

For more information, contact Zandra Vaccarino on 021-1587150.