Andrea was born in Genova at Gaslini Hospital in August 2016, at 25 week and 5 days of gestational age, after a troubleless pregnancy. Doctors told us that prognosis was unpredictable and he would be hospitalized for a long time.
So his battle starts:
After 2 day the first new: second grade intraventricular hemorrhage. It seemed stable so we kept watching.
After 4 days: intestinal perforation. We tought it could be solved without problems, but it wasn’t and Andrea began a long and stressful fight for life. After one month of intensive care, four abdominal surgeries and one retina surgery to both eyes, we tought we would come back home with a stoma (an opening on the abdomen connected to digestive to allow faeces to be diverted out of body).
During last checks before going home, cerebral ventricles looked bigger than the should have been, so he was monitored again and we came back to NICU. It was October and Andrea was operated again for late obstructive hydrocephalus. Neurosurgeons suggested teventriculocisternostomy to avoid a ventricular derivation and during first days it seemed to work, but then there wasn’t enough flow and and an atrial derivation was needed.
On 22nd December we came back home, we were exhausted, happy, but afraid of what will be without any certainty about the future. Doctors presented us a difficult journey, to be faced day by day, without long term expectations. We had to work on it withvgym, physiotherapy..
During February 2017 Andrea was recanalized and slowly he started gaining weight.
During November 2017 he had a neurosurgical problem again: the atrial derivation didn’t work anymore, so it was replaced by a peritoneal one. Meanwhile Andrea still has to learn walking, he was not able to crawl and we were doing water physiotherapy. During June 2018 he needed another surgical revision.
It’s September 2019 now. Andrea is about to go to kindergarten, he talks (a lot), he sings, he runs and he swims and he makes us so happy everyday… His neurosurgical journey is certainly not finished yet but we are learning to live side by side with fears and we try to enjoy all the good things day by day.
As we learnt from Gaslini every story is different, and that is our story. We decided to tell it now because it was very hard to cope it for all the family. But during this difficult we met special people who sustained us when it was necessary and helped us to keep in the real word when we need. We met other families who suffered in the same way and we shared happy and sad moments and we make a connection difficult to explain.
We leave our story to make other people be able to face life events with a hope… Anything can happen!
