Valentina’s Story, Italy: Perinatal Stroke, Diagnosis Delayed 18 Months
Editor’s Note: Story translated from Italian
On September 20, 2013 Valentina was born becoming the 4th member of our family.
After having spent a full month prior to delivery monitored at the hospital (liver cholestasis showed up during the first pregnancy), Valentina’s birth was not only a moment of joy for all of us, but also a true moment of liberation for my wife Veronica.
Once home, a new life started. Leonardo, Valentina’s 3.5-year-old brother, could not yet understand what that creature was. But he loved pushing her around in the stroller and watching her sleep in her cradle or in bed.
After one month of perfect newborn sleep-eat-poop pattern, Valentina woke up from her afternoon nap with a ping pong ball sized bump on the bottom left side of her neck.
Rushing to the hospital we started thinking where this bump could have come from.
What we hoped would have been a short pilgrimage to the hospital became the chamber of a one-month hospitalization. This stay culminated with Valentina’s surgery to remove an abscess full of Staphylococcus aureus, a transfer to the intensive care department, a transfusion, loads of antibiotics and, at last, home again.
As Valentina started growing, we noticed difficulties in the movements involving the left side: she would not turn her head to the left, she would not rotate to the left when lying down… many small signals were telling us we should have raised our level of attention.
At the hospital, where we went for routine check-ups immediately after the surgery, the doctors told us we were too anxious and recommended that we do some sort of stretching and that the difficulty in moving to the left side might have been due to the surgery itself and the baby was still recovering. The stretching and small exercises we did were helpful. Yet, by 2015, as Valentina was trying to learn how to walk, it became evident that the problem was of a different nature.
Thanks to our pediatrician, we managed to meet a very good neuropsychiatrist. On April 16, 2015 we were told that Valentina had a hemiparesis of the left side.
The neuropsychiatrist immediately contacted on our behalf, a neurologist that would have monitored Valentina from that moment onward and would dig onto the root causes from a clinical perspective. A neuropsychiatrist was also contacted to coordinate the motor skills recovery phase of our baby.
All were very quick in activating and, within three weeks, Valentina had a diagnosis -cerebral palsy-, a motor skills recovery therapy and the control visits all set up.
Today, Valentina is a beautiful, loving, lively and cheerful baby. She is now going to pre-school where she can attract full attention of her classmates.
Her motor skills recovery therapy is continuous –currently three times a week, the check-up visits are every 4-6 months and every time we get the goose-bumps when doctors call us to discuss the results of the EEG warning us of the potential risk of epilepsy. Alongside of these important Griffiths evaluation analyses are carried out every 4-6 months.
We are grateful to those doctors who have taken us seriously and have allowed Valentina to gain much progress in the past 18 months. However, we cannot but ask ourselves: would Valentina be in a better position today if we had been listened to since the beginning of 2014 when we first noticed a problem?
We are constantly thinking about the future of our children and we are doing all we can to specifically ease that of Valentina. In order to have a more constructive dialogues with doctors my wife Veronica started studying bio-engineering. Maybe in the future we will be able to design by ourselves the best orthosis for Valentina and also to support other children.
Help us #MakeMayMatter for kids impacted by stroke! Share this story and #BeAVoice for pediatric stroke.