NHS Won’t Cover Prosthetic Foot for Girl Who Had Amniotic Band Syndrome

When Kara Roberts learned that she was pregnant with a daughter, she was thrilled. While her pregnancy itself was relatively normal, Roberts learned that her daughter, Scarlett, would need one foot amputated due to amniotic band syndrome. This condition results from string-line bands from the amniotic sac lining that get tangled around the baby in the womb, trapping parts of their body. In Scarlett’s case, the bands wrapped around her foot, leading to issues. 

Scarlett uses a leather prosthetic foot, which Roberts describes more as a “boot.” As reported by BristolLive, however, this prosthesis requires replacement every few months. Roberts shares that the material often wears out in weeks, leaving Scarlett grappling with discomfort and blistering. 

At six years old, Scarlett is now beginning to ask questions about her condition. She questions why she isn’t able to wear different types of shoes (often because the “boot” does not fit) or why her boot hurts so much. 

As a result, Roberts is currently petitioning the NHS to cover a silicone foot prosthesis for Scarlett, which would need to be replaced once or twice each year. While the family was able to acquire one prosthesis through a fundraising event, they are looking for additional help. But will they get it from the NHS? 

It doesn’t look like it. Right now, the NHS is sharing that it would be too expensive to replace the prosthesis for Scarlett as she grows older and requires a prosthesis that fits her. 

Roberts hopes that, by raising awareness, the family might be able to acquire some additional assistance.

About Amniotic Band Syndrome

As described above, amniotic band syndrome occurs when tissue strands trap parts of the baby, causing pressure and indentations in tissue and—in tighter cases—bone. This can cause a variety of different defects and abnormalities. It’s important to note that amniotic band syndrome happens spontaneously; there is nothing that the mother can do, or has done, that influences this syndrome. Symptoms vary widely because it can affect different areas of the body. Potential manifestations include webbed fingers, leg length discrepancies, skull defects, cleft lips or palate, club feet, shortened limbs, or miscarriage.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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