Dear ones, when Nadine’s son Noah was born with Down’s syndrome, Nadine’s world collapsed. It soon became clear that Noah also had a heart defect and would need an operation. This was followed by months of great anxiety and worry. Today, Noah is a happy and heart-healthy boy who brings a lot of love to his family. We spoke to Nadine about the first difficult time, a real encouraging interview that everything can turn out well!
Dear Nadine, you have a son with down syndrome. Tell us what kind of child your son is
Noah will soon be 7 years old and, first and foremost, he is actually a completely normal boy: he loves playing football and the fire brigade. He likes to dance hip hop with his sister and can play in the sand for hours. And yet – whether for our family or in general – he is something special.
I always say: everyone needs someone in their life who can show them affection the way Noah shows me when I’ve been away for 10 minutes. Or when he picks up his sister from school and shouts Momy (Romy) loudly and runs across the schoolyard to hug her. He always touches people with his loving nature. So far, he has managed to soften every heart he has tried to conquer. If he didn’t exist, he would have to be invented.
The first few years weren’t easy with him because he also has a heart condition. What exactly was there?
Officially, he is now considered to have a healthy heart, but we still have to go to the paediatric cardiologist once a year for a check-up. When Noah was born, he had a ventricular septal defect (VSD) – colloquially, a hole in the wall between the heart chambers.
There was a sentence that the paediatric cardiologist who discovered the heart defect said to us that knocked the socks off me for the second time after my Down syndrome diagnosis. Namely: He won’t live to be a year without an operation.
This had a huge impact on his first 6 months because he had to take a lot of medication and we lived in constant fear that he could become ill. RSV in particular was a big scare back then – and that with a daughter who was just 3 years old and came home from childminding with a cold almost every day. It was a very isolated and anxiety-ridden time for us and also showed us that not every friendship or relationship can withstand such a crisis situation. Very few people can probably understand what we had to go through back then, but I always think: thank goodness!
Noah was then operated on when he was 6 months old – but unfortunately the first operation went wrong. We had to fear for his life for 5 days until his heart defect could be repaired in an emergency operation. I really don’t like to remember that time.
But what was also interesting was that the fact that Noah had Down’s syndrome completely faded into the background; we just wanted him to live. When I look at the old photos today, you can see how ill he was back then. Fortunately, I didn’t realise it that much at the time. Fortunately, you don’t notice it anymore today. We are very grateful for that.
What were the biggest challenges for you as a family during this time?
I found it difficult that Noah’s sister had to take such a back seat and also really raged a lot (and rightly so). Suddenly we were constantly at the hospital instead of in the playground with her. Luckily, the two grandmothers were incredibly supportive during this time. My mum moved in with us for weeks.
And the isolation – no one was allowed to visit us if they had even the beginnings of a cold. For friends and relatives, life just went on during this time, while our lives seemed to come to a standstill. We weren’t allowed to go on holiday. And then there was the constant worry of losing the child. But alongside people we were also disappointed by during this time, others were totally supportive. Those were definitely the longest 6 months of my life. After that, everything went uphill for Noah and he made up a lot of ground.
Your son started school this year. How is he doing as a schoolchild?
Noah loves his school very much and is a very proud schoolchild. Unfortunately, we don’t have such a good range of inclusive schools in Lower Saxony and as Noah didn’t always feel comfortable at the inclusive daycare centre, we decided to go to a Waldorf special school. The absolute best decision.
For the first time, he really feels like he belongs and has already found a best mate. I find what this school does really incredible. Unfortunately, the school is a bit further away, which is why he is picked up by bus. But he thinks that’s great too and he feels independent and big. It also means a little relief for us.
What do you wish for his future?
My wish for Noah is that he manages to live independently and maybe even find a job at some point. But all I really want is for him to be happy and to be able to live his life. In society as a whole, I would like so much for people with disabilities to be able to be everywhere and for having a disability to no longer be something special. The way Noah is sometimes stared at can be very unpleasant.
And I could really do without some of the reactions and comments. On the other hand, Noah is like an „asshole radar“, you realise who you’re dealing with much more quickly than usual – that has its advantages. Basically, I’m always happy when someone asks me something about him – even if it’s a stupid question. The main thing is to overcome this inhibition threshold that many people have.
And my wish is to be able to do more for myself again and to travel more. I actually just want to take a breather and not have to fight for anything. It can just be a bit boring for once.
You’ve achieved a lot in the last few years – how has it all changed you?
Others could probably answer that better. What comes to mind: I never thought I was very strong and resilient and the difficult time with Noah taught me otherwise. I would now consider myself to be very resilient. And above all, I obviously have an unshakeable positivity in me – I just never realised it. As a mother, you simply rise above yourself and become a lioness – this strength in us women is something special. And especially when our children have problems, we become even stronger. Crazy.
Is there anything you have learnt for yourself?
To ask for help when you can’t do it any other way. And that life isn’t always about being happy and that everything has to be perfect. Having children is simply the wildest adventure you can embark on. Climbing Mount Everest is nothing compared to that. And I learnt from Noah that kindness and honest joy can melt the hardest rock.
What are your goals in 2026?
Keep off the 14 kilos I managed to lose this year. Go jogging. Spending a lot of time with friends – especially those who live further away in Munich, Italy and the Rhineland. And invest as little energy as possible in people who are not good for me. But I don’t really have any big goals. Getting through the winter without being hospitalised would be a great start – everything else is a bonus.
