“When you are the parent of a preterm baby you don’t live day by day. You live hour by hour“. I am speechless while Michela Mian tells me about her experience as mother of two preterm babies, now aged 4 and 7. Beside her personal experience, Michela is acting as president of the volunteer organisation CucciolO, based in Bologna, a city near my home-town. I have read on a newspaper about their work to support families who undergo the stressful journey of caring for a baby born before her development is complete. I got in touch with her to understand more of a world which is invisible to most parents.

CucciolO was founded in 1995 by some parents of preterm infants. During the past 20 years it grew along with its achievements.
“Our main goal is to support preterm babies and their families“, Michela says, “Doctors and nurses are fantastic. But parents need also another approach, the listening ears of someone who went through the same thing, and that’s what we provide them with“.
Michela tells me the current government policies in Italy are inadequate. “The six month maternity leave starts from birth, but it should be starting from the expected birth date instead“. She opens up about her first pregnancy and the birth of her son at around 6 months into gestation. She spent five months caring for him at the ICU and was forced to take a sick leave to assist her family when the parental leave ended soon after. “In Italy you can take up to two years of leave to assist a sick family member. Two years in all your life, not for each case. I applied for the whole duration for my son, but now I need to hope no one else in my family will ever need my presence“. It can take up to three years for preterm babies to catch up with their peers’ development. “A preterm baby’s body didn’t complete its natural course. They may be in a thermic cot, but they should be in their mothers’ belly. It’s not the same thing and that shows later as well“.

CucciolO is committed to offer assistance on many fronts. The association donated several machineries to the local hospital over the years, following directions of the medical staff. Volunteers are in direct contact with the facility and visit weekly to listen and talk to parents, or to provide skin-to-skin contact to preterm babies whose families cannot afford to spend long time at the ward. “Take a mother who gives birth to twins and she can take only one home. Or a mother of three children, the youngest’s preterm and she needs to care for the family at home. We had cases of preterm babies relinquished for adoption at birth. We support them by making sure the baby gets the human contact the medical staff cannot systematically provide“. They even helped to set up a room in the hospital for parents to sleep close to their baby.

Picture: Wikipedia

Michela also tells me it’s common for preterm babies to be unable to digest formula milk. If their mothers are too stressed out to product breastmilk, it becomes a matter of life or death. “This is why we got involved into the ‘Allattami‘ project”, she explains. “We have a network of mothers who donate their extra breastmilk. Our association delivers an electric pump to them, then a van comes later and collects the milk. We took part in this initiative for the past 5 years and donated over 13000 bottles of milk to families of preterm children“.

I wonder, what can a friend or a relative do to support families in this situation? “Respectful silence is better than trying to forcedly comfort parents. The mother a preterm baby is very fragile, she blames herself and her body for the situation. She was ripped off her dream of maternity“. Preterm babies are at high risk of neonatal death, as well as permanent disabilities. Their parents need to count on adequate policies, reliable medical assistance, and peer support. November 17ht, 2017 marks this year’s World Prematurity Day. You can contribute by donating to CucciolO or to organisations as March of Dimes or Bliss. Consider volunteering or setting up a similar support network in your own town.

I learned a lot from this one conversation with Michela. Families of preterm babies need continuous support on the hardest months when they witness their baby struggle behind a glass, as well for the following years where they need to meet special needs or development conditions of their children. Let’s not leave them alone.

Disclaimer: originally the interview was carried out by phone in Italian language. Please take into account this is a not a professional translation.