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Nadia’s story

Nadia's StoryOn 16 June 2014, Nadia Merhi gave birth to beautiful twin girls, Tia and Talia, at 25 weeks gestation. The girls were 15 weeks early.

They spent a long and turbulent time in the neonatal unit, filled with an immense amount of uncertainty, worry and pain.

Like many babies born so early the girls suffered with severe respiratory problems as their lungs were so underdeveloped. They were ventilated, old school, with a pipe down the throat, and then put on various other respiratory support systems including CPAP and Vapotherm.

Nadia told us, “To be on CPAP my daughters had to have a mask on their noses, tied on to a hat to hold the hoses up on their heads. These had to be on pretty tight and as result, my tiny fragile babies had their soft-boned faces squashed beyond recognition. What’s more, the mask had to be changed every six hours so my babies, who were not meant to be born yet, let alone handled, were subjected to pulling and tugging at their noses and faces, resulting in a lot of pain and discomfort”.

This kind of handling has a severe effect on tiny developing brains, causing them to be hardwired to perceive touch to the face as negative. Nadia said “My girls, Tia especially, who had to endure CPAP for 77 days, suffered greatly with sensory sensitivity and could not tolerate any kind of touch to her face, especially around her nose and mouth. At one year old she has only just started to allow me to feed her and we have only just embarked on the weaning process”.

Nadia's StoryAs well as respiratory problems the girls battled infections and had numerous full body blood transfusions. Tia also suffered another great risk facing premature babies – bleeding in the brain. She suffered a Grade 4 intraventricular haemorrhage on one side of her brain (which is the worst type of IVH).

“For months we waited not knowing what effect this would have on her life. She had an MRI done after she came home from the hospital which confirmed the damage and led to a diagnosis of cerebral palsy and hemiplegia. As a parent, it is devastating receiving such a diagnosis and not knowing what the future will hold for your child. Coming to terms with the fact that your child will have a permanent and life changing disability is the hardest part.” Nadia confessed.

They are now committed to regularly seeing a physiotherapist, occupational therapist and also a speech therapist.

Nadia's StoryNadia admits, “The consequences of prematurity are far reaching and affect families in profound ways. One year on, we are still constantly having follow ups, physiotherapy and even speech therapy because the feeding problems have affected the girls’ language development. Even though the neonatal unit seems like a lifetime away, the trauma that my whole family has been through endures.”

"In support of Tamba’s new research programme I am letting you into the deepest and darkest part of my life. I am letting you see my babies when they were on the edge of life and death. My endurance was tested for 90 long days and nights when sometimes all I could do was just look at them. When sometimes we didn't know what the morning would bring…

Any research that can help to prevent prematurity and save tiny lives is worth investing in and that’s why I am supporting Tamba’s new research programme.”


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