I’m Daniela
our experience began when our second child, Andrea, was born.
Our shock was great since during the pregnancy none had told us the fingers of his right hand were missing.
Maybe during the morphological ultrasound the left hand had been displayed twice, or perhaps the right hand had been considered normal and closed in a fist.
The days following the childbirth were terrible. We were among cheerful parents and could not feel the same.
I tried to cover the child’s hand with the romper suit sleeve; I was prey to a feeling of guilt I could not rationally explain.
The hospital gave us no clarification; they told me that maybe I had taken some drugs during the pregnancy, perhaps before knowing I was expecting a baby, but I was sure I hadn’t. I had even asked my physician before taking wheat germ!
In those days I cried so much and even in the following days I could not stop crying.
I just stopped when I tried to think about something else or to hide from my other child but as soon as I found myself alone thinking, I could see nothing but the problems we were going to face.
My father had the worst reaction: he could not even hold the child in his arms.
My husband never cried, and when I told him that it would do him good to let off steam, he told me that he didn’t understand why he had to cry and let himself go, even though he was devastated too. He kept telling me that we had to be strong, especially for the little one, and that his serenity would depend on us.
In the meantime, we underwent some medical examinations (x-rays and ultrasounds) to ascertain the absence of other related disorders and we went to meet the first specialist we had been directed to, an orthopaedist at the local hospital.
The meeting was awful; he told us that, according to his experience, such cases were related to mothers who had undergone amniocentesis. Thus, my guilt became a huge weight.
Anyway, we were directed to another Hospital, the Hand Surgical Centre, where to our amazement, the doctor asked us to undress Andrea to visit him. I was about to tell him that it was not necessary, since the hand could be seen very well anyway, but he started to examine the chest and made the diagnosis, explaining that the right major pectoral muscle was also underdeveloped. It was only an aesthetics matter, but it would become more and more visible with the passing of time (Andrea was 10 days old).
We agreed to see each other again a year later (in a little more than a month now), to check the x-rays and ultrasounds that we will do again for control and to talk about possible solutions (almost certainly prosthesis to be put in a few years).
The meeting with this doctor was very positive for me, first of all because he relieved me of the guilt linked to the fear of having done something, even if in good faith, that could have caused or facilitated the problem to arise; secondly because he gave us a clear picture of the situation. He strongly focused on the fact that other patients in these conditions live normal lives and that in most cases they do not even want to wear prostheses, since they get used to the limb as it is and live peacefully.
Anyway, we didn’t stop and we went to a hospital in northern Italy:
We were told again that it was too early to decide what to do (Andrea was 35 days old) and that we should talk about it again as he would turn one year old.
Also this doctor was very compassionate, he handled the situation from a psychological point of view, starting by saying:
“Let’s set things straight:
We don’t need surgery to save his life.
Andrea is fine and healthy as he is.
Now I know that the doctors were right about living a completely normal life, because I have personally experienced it in almost a year:
Andrea doesn’t look for help for the things he can’t do with his right hand, he rather finds his way with his left hand and doesn’t want to be helped; after all, it’s normal for him, he was born like this and he learns to do everything in this way.
Moreover, seeing his daily improvements, not only from a motoric point of view, his serenity and the joy he transmits, is the greatest injection of optimism we could receive.
We thought he would have some problems crawling and walking around holding on to furniture or grabbing and using certain toys, but we are always amazed at how he does it naturally.
This strengthens our belief that unless we create useless worries to him, he will be able to live peacefully a life. It will reserve him some complications, above all psychological, in his relationship with others anyway.
I now realize I am the one putting people in a difficult position when they dare ask what happened to him, and I reply with a plain “Why?”
“Where?”, as I don’t realize they are talking about the hand and everything is in its place to me.
There is one thing I won’t give up on:
that we had to wait 10 days (terrible days and we were even lucky) and a hospital visit before getting to know the pathology name, when it would have been possible to know it during the prenatal ultrasound.
I surely would not have interrupted the pregnancy for a hand issue (and it would not have even been possible by law) but every mother has the right to know the results of an exam she undergoes.
This is the reason why I consider the role of Aisp as essential, a reference point for all the people suddenly hitting the wall of a rare disease, barely known and on which everything can be found on the internet.
After getting the diagnosis in Modena, we immediately threw ourselves into the web and, beside Aisp website, we found other sites providing medical information, concerning possible solutions as well.
An American website explained that rarely leukaemia and non-Hodgkin lymphoma were found along with Poland.
We got extremely worried and we immediately wrote to Eva and called the doctor to get clarifications and reassurance. We luckily got both from them.
General and real time information, as well as the free day hospital with a specialized team, are really fundamental for people like us, facing such new experiences none is ever ready for.
Ten months have gone by, the baby is as beautiful as ever, and the problems that seemed so huge beforehand, have become situations to be managed with serenity and in the best way, with the awareness that he will have a normal and happy life like all the other children.
I wish all the families in the same situation to stay united as we did and to stay strong, above all for the children.
