DUBAI // Support groups have forged a network of families to help cope with the heartbreak of watching infants battle life-threatening conditions in hospital.
Mothers reach out to each other for advice on how to deal with the problems faced by premature babies – preemies – to talk about upcoming surgery, or simply for a shoulder to lean on.
“I get several calls or messages from people who are worried their child is not making progress or is having trouble breathing. They want to know what to do,” said Samaiya Sakrani, whose daughter Rania Fahad was born at 26 weeks and weighed 900 grams.
“Early intervention is important, and families need more emotional support.
“We need to create awareness that there are people willing to help. It’s a whole world out there that you have no idea about until you’re in it.”
Rania, now 4, was in intensive care for 113 days, on a ventilator for more than two months and required treatment for chronic lung disease and bleeding on the brain.
She went home with an oxygen tank, then returned to hospital for eye surgery.
Parents needed to know the complications a baby could suffer, the high expenses involved and the depression they may grapple with, said Ms Sakrani, who started Preemie Parenting – Dubai, a Facebook and WhatsApp-based support group.
“The first year is really tough. Your child is out of intensive care. You are emotionally pretty depressed because you have gone through a hard time. If you keep it all in and say, ‘Everything is OK,’ you break down inside.
“Once I started talking to others and accepting that we did go through a hard time, it gave me strength.”
Over time, Rania has grown stronger. Petite at four years, her voice is still soft from being on the ventilator for nine weeks, but her mother describes her as “perfectly fine physically and emotionally”.
“In school they say she is a bit behind and she may be a bit delayed in terms of speech, but it doesn’t bother me. After all she has been through, as an adult if I had gone through it, I would be delayed as well.”
Maria Settembri remembered every detail of her son Joaquin’s 113-day hospital stay after he was born at 23 weeks, weighing 600g. He underwent a hernia operation, eye surgery and 36 blood transfusions before he was discharged at four months and later required laser surgery for his vocal chords.
From that tentative start, the five-year-old now swims and plays football and tennis.
“He is a super happy boy. There are no major consequences, but I make sure he does exercise for strength and mobility. Things that come natural to others, come slower for him. If I boost him now, it can prevent future problems,” Ms Settembri said.
Now pregnant with her third child, she asked parents to be proactive.
“Get to know the doctors and be on top of everything. It is not enough to be present, you must be there emotionally.”
Joanne Hanson-Halliwell helps mothers to cope via the support group Small and Mighty Babies. The group also helps grieving parents by linking them to others who have suffered the loss of a premature child.
“It’s about giving someone a hand to hold and getting them through the stress,” Ms Hanson-Halliwell said.
“Some babies in the group were born at 600 or 700 grams, it’s so beautiful to see them outside the hospital as little boys and girls, to see their strength.”
rtalwar@thenational.ae
