Pietro was born the 8 of March 2001 in Turin, Northern Italy. He showed some of the major  features of BWS: macroglossia, umbilical hernia, birth mark on his forehead, hypotonia. The diagnosis was made when he was three months old and showed hemihypertrophy on the right side of his body. As soon as it was clear for us that BWS was fairly unknown I started to look for information on Internet and I met this site and the support group.

Reading every day about other babies and families with the same problem is really something I cannot live without. You can share your happiness but also your doubts, you can help new families and above all you will never be alone.

Thanks to the group I discovered that in Saint Louis there was a doctor, called Doctor Marsh, who performed the glossectomy several times on babies with BWS…..so…..

….Once upon a time there was a little Italian baby who left his little village in the Italian country to go to America.

We left the 12^th of December under a lot of snow, due to it our plane was very late, we missed our connections in Frankfurt but at the end we made it to Saint Louis.

The surgery was scheduled for the 19^th December, so we had some days to discover the city.

The 19^th December at 8.30 a.m. Pietro entered the operating theatre with his little bear Kaloo and his new friend: ,the anesthetist, without looking at me or my husband. The surgery took approximately one hour, and when the baby was ready to join the PICU they called us - we were waiting in the parents room.

I saw a poor baby in pain, I cannot forget his eyes, he was angry and scared….we loved him so much in that moment!

We went to the PICU and we stayed there for the all day and night, he slept quite all the time, sometimes in his crib but above all in my arms. He had morphine every hour till 4 a.m and Tylenol with Codeine every six hours. The drool was bad  and so we had to wear stuff to protect our clothes.

DAY 2: we joined  a regular room at the eight floor. He felt a little bit better, above all because he had some of his tubes removed. He still had the feeding tube and the IV. He was hungry and he just wanted his “Mamma”.

DAY 3: no more IV, and the feeding tube was fixed at the machine just every six hours  in order to feed him with Pediasure. He started to have a tray at every meal, but he just played with food.

DAY 4: as the previous day he didn’t want to eat . In the late afternoon he had some water from his father’s hand: We were playing with the water fountain next to the elevator and my hubby poured some water in his mouth.. and he drunk!

DAY 5: we bought a water bottle in the Cafeteria, the one with the strange stopper, he liked it very much and he started to drink well. No food at all, he didn’t like American food, even the food in a jar also before the surgery. We were worried, but doctors and nurses told us to be patient, every baby is different in the way he reacts to the surgery, just wait!

DAY 6: Doctor Marsh decided to discharge him with the feeding tube because it was Christmas Eve and  he (and we) was sure that out of the hospital it would be easy for him to start eating. We went down to the Cafeteria to have breakfast and Pietro, who probably understood he had to keep that terrible tube in his nose, ate half a cup of yoghurt.

The tube was taken away and we went back to our hotel again under a lot of snow! A beautiful white Christmas!

When we were in the hospital we spent the majority of our time out of the room, walking in the corridors, having fun at looking at all those beautiful fishes, going to the playroom and “touching dogs” when it was possible. Santa came when we were in the PICU ,but Pietro was sleeping. He left a bag of toys for each child in the ward.

The following days weren’t pleasant, he was clingy but the biggest problem was that he didn’t want to sleep, neither during the day nor during the night. He slept for one hour, one hour and a half and then he woke up screaming. He continued this way for other two weeks, even when we came back home, the 30^th December.

After more than one month his tongue looks very nice, no more stitches, the shape  is very similar to a “normal” tongue, he can chew food and drink from a glass as he never did before. The drool is almost disappeared and he keeps his mouth closed the majority of the time. He sleeps all night long and he’s again the happy baby I left in Italy the 12^th of December.

We are really more than pleased with everything concerning the doctor, the surgery itself, the hospital, the hotel and the American people who are really very very kind.

….Here is the end of the story of the little Italian baby who….

January 2003

LA STORIA DI PIETRO