Expat starts support group for Dubai mums with premature babies

DUBAI // Born at just 23 weeks, his weight hovering between 500 and 600 grams, Joaquin Philipp was - and continues to be - a miracle baby, his mother believes.

A micro preemie - the name given in the United States to a baby born between 23 and 25 weeks gestational age - Joaquin, who was born last year, spent four months in a neonatal intensive care unit (NICU) at Dubai' Latifa Hospital before being sent home.

With the odds of survival at just below 20 per cent for a foetus at 23 weeks, Joaquin was on the cusp of what is considered a viable pregnancy.

Now, at 18 months (although doctors will judge Joaquin's development going by his corrective age of 14 months) the young boy continues to grow, showing no sign of any major complications.

Almost a year after bringing Joaquin home, Belen Settembri, from Uruguay, has started up a support group for parents whose children are born prematurely.

Although the care provided at the NICU was superb, the mother-of-two believes that aftercare support, in terms of helping families cope with the stress, still needs to develop.

"He was so small. He was 600 grams. It was really very difficult. It was horrible to see," she said. "The first time I went to see him, I couldn't touch him. It was very difficult for me to see him. It was a shock."

Seeking help shortly after seeing her son for the first time, the mother was first directed to two psychiatrists, at a different hospital, for counselling. Still unhappy, Mrs Settembri then consulted a private psychologist, who helped her overcome and deal with her anxieties.

"I was feeling that I was always very grateful for the hospital ... but, on the other side, with some doctors, it was very difficult with the communication," she said.

Mrs Settembri put together the support group after speaking to the head of the NICU department that treated her son. Although all parents are welcome, the group specialises in helping people whose children are being kept in the NICU long term.

"We go through the emotions that you have during this time that you have your babies at the NICU," she said.

"I also tell them about looking after themselves, because it is a very energy-draining time," she said. "Most of the mums start feeling either guilty because they are not spending enough time there at the NICU or, if they have other kids at home, they feel guilty because they are not spending enough time with them. They always feel like, 'this is not enough, what I am doing?'."

Mrs Settembri also gets mothers (and the occasional father) to create weekly goals, where they allow themselves time off to try to relax. But the main focus is on emotion.

"I ask them to make metaphors explaining their relationship with their kids. Then, I put some different emotions on the floor and I ask them to go and step into one, and they explain why they are feeling like that. After that, we have a question-and-answer session."

The support that parents need comes from different places and different people, said Dr Alaa El Demerdash, a neonatologist and head of the NICU at Latifa Hospital.

"In our unit, the nurses support the mothers. They help them to hold the baby, talk to the baby, breastfeed and offer 'kangaroo care' [skin-to-skin contact with the baby].

"We also have support from social workers when there are particular issues. We put a lot of emphasis and effort ON WHAT? within the unit."

Counselling is also available, with a number of staff trained to help parents cope with the loss of a child.

"I think, definitely, you cannot have too much support," he said. "The more programmes we have available for parents, the better it would be."

zalhassani@thenational.ae