Labour of love!
Parents making heavy sacrifices to care for children with microcephaly
PARENTS RAISING children with microcephaly – an abnormal growth of the brain and stunting of the growth of the head of the foetus, arising from infection in the first months of pregnancy – are making heavy sacrifices for these children who require special care throughout their lifetime.
Former chairman of the Medical Association of Jamaica (MAJ), Dr Shane Alexis, and the current chairman, Myrton Smith, used a recent Gleaner Editors’ Forum to outline the pressure faced by parents whose children have this birth defect.
“Caring for a child with microcephaly is really hard. These children grow and I have seen parents trying to lift them up. It’s all well and good when they are small and are easier to carry around. When they get bigger, real problems present themselves, it becomes a labour of love,” said Alexis.
“The microcephalic child requires a lot of attention, hugs and kisses. Don’t just focus on the head alone. There are many other issues which will require visits to specialists. Our hospital network only has specialists at certain clinics.
“That means you have to traverse parishes in one day to get treatment. Each clinic has a different day so that’s several days,” added Alexis.
He argued that some parents may not be able to earn a living Normal baby versus baby with microcephaly.
to take care of the child, because of the special needs of someone with microcephaly.
“So if you multiply the number of children with this for the last 10 years, given all the things we mentioned before, then you will see the economic impact on these families.
“Working at the Bustamante Hospital for Children, seeing these children and getting to know the parents over time, it’s a real labour of love. It’s a fantastic thing to observe them and the connection they have with the child that many of us may not understand.
“And the support services such as schools, day care, all have an economic impact on the families. So it’s not just a medical impact. It has an economic impact,” noted the former MAJ president.
For Smith, who is an ear, nose and throat (ENT) specialist, treating children with microcephaly require special medical care, especially in the parts of the body in which he specialises.
“Many times, these children need special attention, and there is an additional cost to this. But if you want to get the best out of them you have to focus on the special education that is needed to maximise their potential,” said Smith as he brought the forum’s attention to a microcephalic young blogger, whose potential was being realised.
“Working in ENT and head and neck, there are times when we have to do a procedure on child with a congenitally small head in order to facilitate not just how the child looks, and which brings with it surgical challenges.
“The airway is usually smaller, so sometimes we have to expand the head in order to increase the airways. These are some other issues that can arise,” explained Smith.
Due to the outbreak of the mosquito-borne Zika virus (ZIKV) in more than 26 countries, including Jamaica, serious concerns have been raised about the virus’ link to microcephaly – an abnormal growth of the brain and stunting of the growth of the head of the foetus.
Babies who develop microcephaly in the womb may not live to full term and may be born prematurely, stillborn or survive with lifelong disabilities.
According to available data, between 2009 and October 2015, Jamaica recorded 35 cases of microcephaly. There were six cases in 2009; 10 in 2010; four in 2011; seven in 2012; six in 2013; and one case each in 2014 and 2015.
Becky’s severe vomiting caused the worrying mother to rush to her daughter’s primary school.
“I took her to the hospital. They said she had gastroenteritis. But that lasted the entire week. The numbness got worse. And then she stopped walking because she could not even stand. I waited for more than two hours without seeing anyone at the hospital, after which time I left because she was in pain all over her body. Then I took her to her paediatrician who referred me to hospital,” said Joy.
According to Joy, when her daughter was admitted to hospital her worry turned to horror.
“I thought she had a stroke when she couldn’t move her right side. When she was finally able to move, she began hopping around on her left foot, resulting in a slight sprain of the ankle,” said Joy.
She charged that initially there was a downplaying of her daughter’s illness at the hospital.
“They told me she was faking the paralysis and wanted her to see a psychiatrist. Then they said her demeanour and behaviour suggest she was being abused. Then they discharged her after two days, saying nothing was wrong
REPORT ON SUSPICION
“During the time she was in the hospital they gave her nothing more than Panadol for the pain, even while she could not walk or help herself,” Joy charged. Then came the dreaded diagnosis that the child had GBS, which is one of the complications linked to the Zika virus.
Up to the start of this month, the Ministry of Health was reporting that there were 111 notifications for possible GBS. Twenty-two of those cases have been classified by the ministry as suspect while two persons with GBS have died.
Twenty cases have been classified as non-GBS, while 69 notifications were still under investigation.
According to the ministry, mortality associated with GBS varies by subpopulation, and an estimated five per cent of individuals diagnosed may die from complications despite receiving adequate care.
For Joy, there were prayers and tears for what she describes as her daughter’s “miraculous recovery”, although Becky still require specialist care.
“She missed a lot of school at a time when she was preparing for the Grade Four Literacy Test. When she was unable to walk, it was piggyback transportation. I had to carry her around to and from school.
“When I went to school the security guard would help me carry her up the stairs to the classroom, and she would remain there until I come to pick her up. This is after the hospital said she was faking the illness,” said Joy.
“We lived on a lot of prayers. We lived with faith and prayers. We are a very feisty family and a very tight family. She is walking now. She actually auditioned for a part in a play and got it. It’s not a sad story when it comes to Becky,” said the exhausted mother.
* Names changed on request AS PART of its overall surveillance of Zika and Zika-related effects, the Ministry of Health has indicated that all microcephaly, Guillain-Barre syndrome and neurological conditions that may be related to Zika virus infection are to be reported on suspicion as they may be related to Zika virus infection.
According to the ministry, Zika virus infection remains a Class 1 notifiable disease and all suspected cases are to be reported to the Parish Health Department or the National Surveillance Unit at the Ministry of Health.
This recommendation, which forms part of the clinical management and surveillance guidelines, was reiterated by the Expert Group on Children of Mothers with Suspected/Confirmed ZIKV Infection at their second meeting last Wednesday.
According to Minister of Health Dr Christopher Tufton, “This is just one of the many recommendations that will be monitored by this expert group, and the expectation is that by the end of September 2016 the capacity of the public-health system will be increased to deal with babies born with microcephaly and other neurological disorders.”