A Baby with Down Syndrome – “Our Story”.
“When you focus on someone’s disability you’ll overlook their abilities, beauty and uniqueness. Once you learn to accept and love them for who they are, you subconsciously learn to love yourself unconditionally.”― Yvonne Pierre, The Day My Soul Cried: A Memoir
Summer 2020: It was a beautiful afternoon in the Südwestpfalz. I’m standing in the kitchen, cooking and listening to my children’s playful laughter in the background. They roam freely around our apartment, singing and teasing each other. A cool breeze blows through the kitchen window, which at the same time offers a beautiful view of the green hills of Pirmasens. My husband Nasser comes home earlier due to short-time work during the Covid-19 pandemic. It’s actually a completely normal day for me – as a pregnant woman before giving birth. I notice how our little Daniel moves lively in my stomach. he was more active that day than usual. I feel the first pains around 6 p.m. I’m a bit scared because my due date is only a few days away.
I told Nasser to go to the hospital and see the doctors about the baby. He wanted to come but there was no one to look after our young children when we both left. The hospital was only a five-minute walk from home. When I arrived safely, the staff examined me, and the first shock came immediately. I should stay and get ready for the operating room immediately!
The hard decision
As if under external control, I signed the admission papers. I realized that I was in a special situation in life from which I cannot easily free myself. First, we had to leave the United Arab Emirates together with our young children. The place where they were born and where they experienced so many happy moments. It was all due to Syria’s inhumane policies. I myself was born in the United Arab Emirates as the daughter of Syrian parents, grew up and lived there for many years. Since my Syrian ID card had expired, I could not apply for a new residence permit. And the Syrian consulate didn’t want to issue me a new one either. Therefore we had no choice but to disappear from our beloved homeland.
Back in the operating room: When the doctors got Danny, there was silence for a while, but I was so powerless that I didn’t notice anything. I only saw my son briefly. He was then taken to the incubator for observation. It wasn’t until the next morning that I had more strength again. I sat on a chair and held my sweet baby in my arms, gently stroking his hair and admiring his round cheeks. The nurse looked at me as if to say something. A paediatrician walked into the room and I suddenly had a premonition as to why she was looking at me like that.
The moment of shock “Down Syndrome“!
The doctor started explaining Danny’s health condition. He spoke of Danny’s small ears and thick neck and a few other characteristics. Then he paused as he said “Trisomy 21.” He paused, realizing that I hadn’t understood the term. He asked me, “Do you know what trisomy 21 is?” I replied: “No!”. Then he said: “Your son has Down Syndrome, Mrs Sabbagh!”. I only remember standing up and handing Danial over to the nurse. I fell back helplessly in the chair. My soul and consciousness sank into a vast ocean of emptiness.
After a while, I got up and paced the room. I felt colder like I was on an ice rink. And I started hearing an unintelligible voice all around me. Everything hurt: my surgical wound, my mother’s heart and my broken soul. My whole life was turned upside down in an instant.
The pain built up in my throat. I had to talk to someone and I had to use my voice. So I called my husband and said: Our son has Down Syndrome! Without hesitation, Nasser replied: “So what? He is our son and we will accept him the way he is!”. His words and calm voice jolted me back to reality. You were the important impetus to move me out of this sadness and shock! My husband was right: “So what! Danial is our son, he is part of our family, just like his siblings.”
I was discharged from the hospital and Danial came home five days later. A few days later I couldn’t breastfeed him enough, he kept falling asleep and started to lose weight. The midwife came and told me to take him to the hospital as soon as possible. The doctor in the emergency room saw me crying. I was just scared for my son’s life. He looked at me and comforted me with the words: “You brought your son here at the right time. We can help him.”. That calms me.
The ups and downs of Down syndrome
This was the first incident on the long journey through hospitals and many medical examinations. But it was also the way to recovery. The doctors of the Pirmasens Clinic decided to send Danny to the Kaiserslautern University Hospital. There he is in better hands. But after a few hours in Kaiserslautern, he was taken to the Mannheim University Clinic. I arrived exhausted with my son at 10 p.m. at the Mannheim University Hospital. We needed the calm first. The next morning, Danny’s situation worsened. The surgeons said it is an organic problem and they have to open their stomachs promptly. My brain was blocked. I’m usually worried when one of my children has a fever. But having several operations on a baby was new and painful for me.
After the operation and the first observation phase, Danial was able to leave the intensive care unit. But he had all kinds of cables with him! It was a nightmare for me to see my little baby. I was destroyed, shocked and felt guilty. I stood next to his bed and couldn’t wear him in my arms. But in the end, I had to accept these facts. That is our current situation. I just hope it won’t get worse.
The adventure with “Down Syndrome” begins!
This got me thinking about what I should do. Babies with Down Syndrome often face challenges early in life. They struggle to learn many basic things. But they fight and defy themselves and their disabilities – and they succeed. With every child, it is always the beginning that creates a bright and healthy future. My adventures with my son have begun. We are both in a special position. I felt like I needed to talk to more parents who had experience with kids like Danny. So my search for life support groups on social media began. I’ve heard pretty much the same thing from everyone, physical therapy and speech therapy, and we’ll move on from there. Somehow I still felt like I was missing something.
In short, everything I had read led me to the possibility of visual stimulation in infancy and childhood. In my research I read that visual stimulation contributes to positive brain development. It also enriches the connection of brain neurons. It also supports speaking, listening, concentration and logical thinking skills.
What was really interesting is an old theory invented by the mandarins. It’s called (Heibaika), which means (black and white contrast maps) in the Taiwanese language. Then I saw articles about the benefits of visual stimulation and its positive effects on babies’ brains and senses and future well-being. I was surprised I didn’t know about it beforehand. The benefits go beyond many aspects, it strengthens the eye muscle and retina, it helps the brain make better neutron connections, and most importantly, it contributes to healthy future well-being. It was really exciting what I’ve learned so far.
I stumbled upon the development of vision as vision is the primary sense because it’s obviously the entrance to the brain where everything else comes later. I stumbled upon an old theory invented by the mandarins. It’s called (Heibaika), which means (black and white contrast maps) in the Taiwanese language. Then I saw articles about the benefits of visual stimulation and its positive effects on babies’ brains and senses and future well-being. I was surprised I didn’t know about it beforehand. The benefits go beyond many aspects, it strengthens the eye muscle and retina, it helps the brain make better neutron connections, and most importantly, it contributes to healthy future well-being. It was really exciting what I’ve learned so far.
I asked my husband to design visual stimulation cards (contrast images) for Daniel. I told him about all the research and information I had gathered. My husband and his decades of graphic design experience created something so unique. As soon as we printed a few cards, I took them to Mannheim. I couldn’t wait to show them to Danny. He looked so interested and focused on the black-and-white design. I was glad he loved her.
An idea takes shape!
Nasser and I thought, why don’t we make the cards for all the newborns? We can see how good it has been for our son, we want others to benefit as well. For such an idea I needed an expert opinion. I called our paediatrician, Dr Pedro Mestres Riba and asked him for advice. He was good enough to guide us and give us some advice. We are lucky to have him on board as he is an experienced doctor. And so my research continued and my husband began his designs.
We started discussing colour, shape and cultural content. The type of images and colours were all in my head. I couldn’t fully explain them, but my husband knew what I was talking about. He asked the right questions to get answers. He helped me describe the image I had in mind. Then we decided to include the colours of the world in our map collections.
Working with passion
Our goal was to give the babies and their families the best. The best possible help for families who are or could be in our situation. As parents of four children, we understand how people want the best for their children’s development. But “the best” also has many possible interpretations.
We think the best interpretation is “the best development for the future”. We put ourselves in the shoes of any parent trying to raise a child. So we created the simulation maps (contrast images) from the heart of our loving family home. We have many more ideas that we will launch over the coming months and years – because the sense of helplessness I felt was gone the moment I was able to help and comfort my son. I am happier today than ever before and that gives me strength.
I would like to give a special thank you to my dear friend, whom I have not been able to meet personally, Dr Phil. Elzbieta Szczebak and her team at the “German Down Syndrome InfoCenter”, work intensively to help babies with Down Syndrome and their parents.