Support group for parents of differently-abled children launched

-16 microcephaly cases recorded

The Ministry of Public Health yesterday launched a support group for parents of children who are differently-abled as a means of offering support and building coping skills of parents.

Director of Rehabilitation Services at the Ministry, Ariane Mangar, revealed that the session brought together 25 parents from various parts of the country and featured presentations focused on coping skills by a psychologist attached to the Georgetown Public Hospital, among other activities.

“We chose to bring parents of children with disabilities, more specifically those with microcephaly which is endemic due to the Zika virus in Guyana…Disabilities will not go away, it is lifelong, and so they will need the psychological support because they will develop a lot of anxiety and depression; it is not an easy thing to have a child that is disabled, someone who, you in most cases have to basically do everything for, for the rest of their lives. It’s hard and they need the support so we are here to offer them just that,” Mangar said.

Among those participating was a mother of two whose younger child has been living with microcephaly for over a year.

According to the World Health Organisation (WHO), microcephaly is a condition where a baby has a head size much smaller compared with other babies of the same age and sex. The severity of microcephaly ranges from mild to severe, and can be present at birth (congenital) or may develop subsequently (acquired). The occurrence of the condition was previously rare but the WHO reported that there has been clustering of cases in light of outbreaks of Zika virus infection.

Notwithstanding, though there are many potential causes of the condition including infections during pregnancy such as Zika and syphilis, exposure to toxic chemicals, and perinatal injuries to the developing brain,  the cause remains unknown.

One woman, who asked that her name not be used, shared her experience as a parent raising a child with microcephaly. During a telephone interview yesterday afternoon, she revealed, that her experience began when doctors noticed a fetal abnormality during an ultrasound.

“At 32 weeks, I did a second ultrasound and they told me that the baby’s head wasn’t growing and I went and do a second one to make sure because I didn’t want to believe it, but the second one came back and it was the same thing,” the woman said. She explained that she was subsequently transferred from her clinic on the East Demerara to one at the Georgetown Public Hospital where they monitored her regularly up until she gave birth.

When asked if she was diagnosed with Zika prior to, or during her pregnancy, the woman said she cannot be too sure but understands that Zika is not the only cause of microcephaly.

Negative

She noted that she would have done some tests after the baby was born but was told the tests were negative for the Zika virus. The woman went on to say that though additional tests were done and sent overseas several months ago, she has not yet gotten back those results.

Notwithstanding,  a year and seven months have since elapsed since she gave birth and she now struggles with trying to balance her attention between her two children, a hard task considering her younger one now requires almost all of her attention.

“Sometimes I does have to wait until my husband comes home from work to eat because I can’t put her down and leave her like other babies. She’s always in my arms, so when he comes home he does hold her while I eat, then I collect her back so he can eat. Even when I manage to put her down during the day, it’s not like I can catch back any rest, I have to hurry and try to do some housework before she wakes up back…sometimes I feel like I don’t have enough time to spend with my other child,” the mother related.

“I can’t go out anywhere because my mind don’t be at ease leaving her with other people. Nobody wouldn’t have the patience I have with feeding her and looking after… I use to work before but I can’t work now because I can’t leave her home,” she added.

And though she has physiotherapy scheduled for twice a week, the woman explained that because of transportation issues, she can only afford to take her daughter to therapy once a week.

“We does have to go for 8:30am but it’s hard to catch a bus most of the time. When we reach out to the road, we does got to wait there long because them bus don’t want stop for people with children, they does want people who can move fast and I can’t do that with her; and then holding her long, long out there does hurt my back,” the woman shared.

Asked if she has seen any progress since her daughter started therapy, the mother responded in the negative.

“She nah sit up, she nah turn or them things, but I does try with she; I does try doing what they does show we to do. Sometimes I does put her to sit by the chair rest but she does fall right over,” the mother lamented.

Financially speaking, the woman said she depends on her husband who does “cement work,” and sometimes find it hard when rain and other factors prevents him from working. “We does try to buy Enfagrow for her, to help her brain and so but it’s expensive so we does find it hard with that sometimes,” she said.

She recalled that she attempted to apply for public assistance before her daughter turned a year but was put on a runaround before her request was eventually accepted in July of this year.

However, according to the woman, she was told that she would receive the payments for one year only, leaving her unsure of whether or not she will be put on the same “runaround” next year.

Meanwhile, Mangar, before the commencement of yesterday’s session, revealed that they have recorded a total of 16 babies diagnosed with microcephaly, all of whom, have been undergoing physiotherapy in Lethem, Bartica, Linden, and in Georgetown.

Offering a short overview of the physiotherapy programme, the Director explained that the level of therapy administered is dependent on the developmental stage of the child.

“If the child cannot hold up its head, we will work on holding up the child’s head, then to get them sitting, if they can’t sit…you want them to do everything a normal child can do but they usually need help to be able to do it. They all present differently so there is no one protocol for all. It depends on their developmental stage and we work from there to try to get them to as close to normal as possible,” she said.

It was noted too that this session is not the first of its kind since according to Mangar, they had about two months ago, hosted a smaller session for parents of children diagnosed with microcephaly.

And while she explained that the first session was one held after a very long time, they are working towards facilitating these sessions on a more regular basis in the near future.

“The main goal is to help parents with their coping skills, to teach them and to speak with them. Sometimes it’s hard and you just want someone to listen to you and that’s why we are here today,” she added.  

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