Kim's testimony, Mika's mother and founder of "Support 22q11 Foundation"
There I was, full of emotions but without the child that I had just brought into the world. Mika was born with the umbilical cord around his neck and was taken away immediately. I did not have the chance to hold and admire my newborn baby. When I could finally have him back, Mika was on a breathing machine. I could see he was crying but he wasn't making a sound. An astonishing image. I just wanted to make pictures of my baby in my loving arms to send to the whole world, but I could not.
On top of that, there were many other concerns. At the time, the ultrasound analysis only took place twelve weeks into the pregnancy, but since we were extra curious about the gender our baby, we had an extra ultrasound performed later. The little miracle in my belly turned out to be a boy! But we got other unfortunate news. One of his kidneys was retaining fluid. Since this is quite common, the doctors did not take any immediate action. Some weeks later however, it turned out that our baby had only one kidney and a severe heart defect, and I had to be transferred to the hospital. The doctors told me there was only a 50% chance he would survive birth, and that even if he made it, there was little chance he would live to be eighteen. We left the hospital at the end of the afternoon feeling completely defeated. We just couldn’t withstand the news.
On February 23rd, 2001, Mika was born. I remember that sunshine and clouds alternated, and I saw in the weather a sign of the challenges to come. We immediately had to deal with his heart and kidney defect. It was a difficult time, full of tension and sadness for me. I wrote down all the misery we were going through in that little book new moms are given to note down all the wonderful moments of pregnancy.
Sitting on a razor’s edge
Soon after the birth, the clinical geneticist diagnosed Mika with the 22q11 deletion syndrome, explaining all the bodily disorders that had been causing such troubles. We then learned about the possible other symptoms, and the psychological problems that could come on top of them. I wanted to know everything about it, but what I read frightened me, so I decided to just focus on the short term challenges: Mika’s kidney and heart failures.
Mika spent the first 100 days of his life in the hospital, and hours in the operating room. It was a close call, he had to be resuscitated, but he was finally able to make it and come home. For four years he was unable to eat on his own and was tube-fed. He slept badly and spit up a lot. He was late in sitting, walking and talking. There was a world of difference in his development, in comparison with he cousin who was the same age. It was very confronting for me to compare Mika to other healthy children, but I did not know of any other children with 22q11. I eventually gave up on comparing Mika with other boys. Mika was Mika.
Mika proved to be a strong boy, who was able to outrun death on several occasions during a childhood. On top of that, he grew into a cheerful, sweet boy who, against all odds, celebrated his eighteenth birthday. What a milestone! I felt like I could finally breathe a sigh of relief.
Adapting to the “normal” world
Mika is mentally challenged, has a speech-language delay and acts at the same level as his seven-year-old sister Elin. He has ENT problems, a shorter palate, talks more nasally and has an autism spectrum disorder, which sometimes makes things a little difficult for him on a social and emotional level. He has low muscle tone and is currently shaking his hands. He has no sense of time or of the value of money.
On the other hand, he knows all the countries in the world. Point to any on the map and he knows it! He is also gifted with computers, and table tennis. He even plays in a club, where they are absolutely fond of him!
The challenge with Mika’s condition is that he looks “normal” to most people, so people assume he will react like a normal boy, which is a pitfall. That challenged him too much when he did an internship at a supermarket: people just expected too much from him. Nevertheless, it was a very instructive experience, and the bananas have never been so straight as when he was there.
Mika has now finished special education, and he goes to day care. It is a wonderful place in the countryside with a large garden and animals, where Mika can work on woodworking to his heart's content. That is absolutely his thing.
Unknown leads to misunderstood
Because the appearance often gives little away, and because the symptoms can be so varied, many 22q11 patients fly under the radar and do not get the help they need. We find this unacceptable, in a world where one in every 2000 child is born with the syndrome! That is why, years ago, we set up the 'Support 22Q11 Foundation', based in the Netherlands. The foundation shares information, organizes seminars, and raises awareness among doctors, social services and schools, so that the diagnosis and the following adaptations can run more smoothly. Lots of children have benefited from it!
Privately, too, this foundation has brought me a lot. 22q11 has now become a very normal topic of conversation for us, and it is not necessarily about Mika anymore. Moreover, the whole family is involved in the foundation. That is great to experience, and it brings so much energy. The absolute highlight was when Mika indicated that that he wanted to participate in the large, national advertising campaign 'Because superheroes really exist'. I fell off my chair in astonishment, and joy! Together with six other children he became one of the faces of the syndrome. Mika enjoyed it so much that he even did an internship with the foundation during his last year at school. He started managing the Instagram account and independently started a YouTube channel on which we still post videos about, among others, Sammie the super monkey (Superaap Sammie, in Dutch), the foundation's mascot. These are moments of true happiness for me.
When Mika grows older, we want to find a real home for him, where he can be happy. We have no idea what the future will bring him. Or his health. We know that Mika will have to undergo another heart operating, with an uncertain outcome. But we have learned to live with this uncertainty. For the time being, we just live life, step by step. That is the lesson I have learned: just live in the moment and make the most of your day. Because that is all that matters: if Mika goes through life happy and can enjoy himself to the fullest, then I am happy too.