A Wonderful Man’s Story who Fundraised for Down Syndrome Years Before his Son was Born…
1. Telling us as much or as little as you are comfortable with, what was your experience of your child receiving a high chance/positive diagnostic result of Down syndrome?
The day after the fourteen-week scan, we received a phone call from the Princess Anne Hospital, Southampton, saying that our scan had presented, and I forgot the exact wording here, a 1-in-3 chance of the baby having Down syndrome. The sonographer had also seen something that didn’t look quite right with the chin, which in itself didn’t worry her but combined with the nuchal translucency neck fold and Liz’s blood results, they felt that it deserved a phone call on a Friday afternoon. The liaison midwife (for diagnoses of chromosomal abnormalities and the like) wanted to invite us for a scan with fetal medicine on Monday morning, hence the phone call late on a Friday. We had a brief phone conversation, and she was both extremely helpful and informative. She ran through some of our options, which included us doing nothing, but we decided that we should take advantage of being able to see the consultant in fetal medicine. The scan showed up some cystic hygromas, with this and the other markers, it presented the potential for a variety of diagnostic possibilities, not just Down syndrome. Both the liaison midwife and the consultant then spent time talking through various options with us – one of these was termination, but it was put forward as an option and, in my mind anyway, not something that was pushed onto us in any way, shape or form. The Non-Invasive Prenatal Screening Test (NIPT) seemed like a sensible test to take. There was no risk of miscarriage at all as a result of the test and, whatever the result, it would give us choices, along with a chance to prepare both mentally and physically. I even starting teaching Sophie, our daughter, Makaton in preparation of her potentially being able to communicate with her younger brother more easily! Blood was taken there and then, and we would have the results back by the end of the week.
I think we had prepared for a positive test already. We didn’t speak about it overly much that week, but everything seemed calm between us and we were still very happy that Number Two was on his way. We had already asked the hospital to phone us as soon as they had the results back and this is what the liaison midwife did on the Thursday, a very quick turnaround I thought. The test was positive. The liaison midwife spoke to us for a while on the phone, told us what would happen from now on, reassured us that we would have the same midwife throughout the pregnancy and made it clear that she was there should we need anything. The community midwife phoned us the very next day and paid us weekly visits until two weeks after the birth. She was amazing and would often fit us in as extra after a very hectic day.
2. As a parent, how did the high chance/positive diagnostic result of Down syndrome impact you and what support was made available to you?
There were so many things that I didn’t know about Down syndrome, more so the physical side of things, and I think that the hospital was very clever and sensitive about when and how much information was given to us. We had scans at week twenty, twenty-eight, thirty-four and thirty-eight, and each time the clinician spent up to two hours with us, bringing over a cardiac paediatrician for a second opinion on the baby’s heart to identify any potential congenital defects and de-briefing us at the end of each scan.
Jack Denis Miller was born at 7.32am on 5 October 2016, at the amazing Princess Anne Hospital, Southampton. We were over the moon at the safe and uneventful delivery of our precious little boy.
For the following two days in hospital, we received, what I believed to be, the best possible care. We were given our own room, something that the midwives arranged for us during the birth, which obviously helped loads. Jack had a heart scan on the first day. We weren’t expecting anything serious as the fetal scans had shown only a potential ventricular septum defect, but this was still a worry, nonetheless. A midwife accompanied me downstairs to the neonatal ward and made sure that Jack’s every need was catered for. She didn’t stop stroking his face, talking to him, and making sure he was comfortable. The bed was at an awkward angle and, although clearly in an uncomfortable position (I know I was), she didn’t stop holding him. The second thing that bowled me over was when the paediatrician came into the room to tell us the results of the scan. He came bounding into the room clapping his hands together telling us of the good news. The scan was completely clear. He was clearly genuinely happy for us. This really did set us off on the right footing.
Through providence, serendipity or otherwise, I had been raising money for Portsmouth Down Syndrome Association (PDSA) for a number of years before having children. This meant that we also had full support from them from the outset and a fair idea of some of the happiness and challenges we might face along the way.
The main reason for opting for NIPT was to prepare ourselves in the best way possible. We knew having a baby with Down syndrome would be life-changing, but it didn’t have to be a bad thing.
3. Tell us a little about yourself and your family.
We are a very happy family of five: me (dad), Liz (mum), Sophie, Jack, and Parker. I am a schoolteacher (11-18) at a school in Southampton, teaching Psychology and Science. Liz works from home where possible and has her own company making hats and other bespoke items. Sophie, the very best big sister, is very nearly six and is in Year 1 at school. Jack, who is now four, attends nursery three days a week and Parker, two, is currently trying to cause as much havoc as he possibly can! Like any other family, we love spending time together and enjoy being outdoors as much as possible. We embrace the crazy times.
4. When did you first hear about Portsmouth Down’s Syndrome Association (PDSA)? How did you first connect?
As I mentioned previously, I had been raising money for PDSA long before any of my children came along. This was through a friend in work whose boy also happens to have Down syndrome. I had met many of the members and been to various meet-ups of theirs over the years, so when we received our diagnosis it made it easy to reach out to PDSA. We started to attend various events as a family, even before Jack was born, and it enabled us to prepare in the best way possible.
5. Tell us about the charity’s #T21challenge? How did you fit this into daily life?
Many charities have seen vital funds dry up in the current climate and PDSA has been no different. One of our biggest fundraisers of the year, the Great South Run, was cancelled so we were asked to do twenty-one things in October.
People with Down syndrome have an extra copy of chromosome 21. The medical term for having an extra copy of a chromosome is trisomy. Down syndrome is also referred to as Trisomy 21.
PDSA have had lots of really interesting entries, including rowing, running, swimming, cycling, baking cakes, teaching twenty-one Makaton signs, jigsaws and Ben (one of the PDSA dads), has been covering a mile a day using a different mode of transport, such as a unicycle, high heels, crawling, pogo stick and other various crazy things! Like others, I fit the fundraising around daily life. To do this I was finding myself getting up earlier and earlier each morning!
6. Running twenty-one half marathons in twenty-one days is impressive. What motivated you?
Failing is always a good motivator for me! Knowing that people have taken the time to message me, support me and sponsor PDSA is always the motivation I need.
7. What date did you complete this challenge? Where can our followers donate?
The original plan was to complete the twenty-one half marathons throughout October, but as I got going I felt that perhaps one a day for 21 days was possible. With the support of friends and family, I managed to do this, so I finished on the 21st October.
The link is still live if people want to donate you can here.
I was overwhelmed with the support we had – both in terms of donations but also messages of support and people willing to run with me. It was tough getting up each morning to run it but it was so worth it in the end.
8. Tell us about your previous fundraisers, your most recent and why you challenge yourself.
Just over ten years ago, my mum took her own life, and at times, I was struggling to come to terms with it and often felt lost. I had always exercised, but I had lost my way a little. It was then that I started to step up my exercise, especially running outdoors. I found it really helped my mental health and gave me more of a purpose in life. It was a cathartic release to challenge myself both mentally and physically, and it evolved into me taking on bigger and bigger challenges. It became part of what I do, and I have never looked back since.
I love running and being outdoors and have done a fair few endurance challenges in the past. I find it so much easier to focus when I know that I am raising both awareness and money for a charity. 2013 was the first year I started raising money for PDSA. In that year I completed the Oner, an 82-mile race along the Jurassic Coastline; the T184, a 184-mile self-supported continuous run along the Thames Towpath (which took 75 hours!) and the Great South Run. I really enjoyed being part of Team PDSA and have always felt a real sense of community.
9. What advice might you give a person with Down syndrome who wants to become involved with PDSA?
PDSA offers a wonderful support network to all children and families with Down syndrome. There are a variety of programmes to get involved with, and it allows people to do things outside of their normal environment. Get involved, you never know what good might come from it.
10. How does the PDSA support you and other families?
PDSA is committed to improving the lives of children and families in Portsmouth, Hampshire, and beyond. We know that our young people can succeed when given opportunities and the right support, and we believe that they deserve the same opportunities and right to experience success as their peers. PDSA provides a range of some of the best specialist services in the UK, supporting development and education, and offers training to assist families and professionals in providing effective support from the point of diagnosis, helping to teach children the skills they need to reach their developmental milestones, succeed at school, and become valued and productive members of their communities. When children with Down syndrome are given the chance to participate and be fully included, the whole community benefits.
From coffee mornings, summer and easter parties to Early Development Groups (Speech and Language), PDSA has been instrumental in supporting Jack’s development. They offer a wide range of targeted interventions and support for all age ranges. I have been lucky enough to set up a partnership through my school. We have partnered up sixteen of our students with the teen group at PDSA in an inclusive friendship group. Pre-Covid-19 they met up at parties, swimming, and rock climbing and this is something we will be continuing in the future as soon as current restrictions allow.
11. What does the future hold for your family?
If only we had a crystal ball! I know for one that I don’t want to live in a world without Down syndrome. It would mean being without my beautiful little boy. I am excited to see what the world will bring for him and, more importantly, what he can bring to the world!
Inclusion is key here: inclusion is not just for people who have Down syndrome but for anyone who struggles to be accepted. All we want for our children is for them to have the same opportunities that anyone else would have and in a more accepting world.
I don’t hold back in celebrating what a wonderful human being my son is. Of course, things are testing, sometimes unbearable and I have lost count of the number of times I have cried on Jack’s behalf, the sleepless nights, the hospital stays, the anxiety and missing out on countless social events with friends. But we are stronger and happier with everything we have. I am grateful for what Jack has brought to our lives and I wouldn’t change one little thing about him.
12. For anyone reading this feature, what advice do you have for parents who have recently been told that their baby has a high chance or diagnosed with Down syndrome?
We honestly couldn’t imagine life without Jack. He is the glue that holds our family together. He lights up every room he walks into and you cannot look at him without smiling. Of course, there are tough times, but a diagnosis of Down syndrome shouldn’t feel like a prison sentence. Of course, there will be trepidation, worry and anxiety, but we should know more about the good news that it brings. I would want every parent to know the joy that having a baby who happens to have Down syndrome brings.
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