Overview
- Nelson posted that her daughters Ocean Jade and Story underwent a hospital procedure to have their nasogastric (NG) feeding tubes removed on Friday, and she shared photos and video saying, “I got their face back.”
- Clinicians have told Nelson that some clinical measures for the twins have declined during recent reviews and there is a possibility the children may need to resume SMA treatment.
- SMA Type 1 is the most severe form of spinal muscular atrophy and causes progressive muscle weakness that can affect swallowing and breathing, which is why NG tubes are used to keep infants nourished when they cannot feed safely by mouth.
- The Department of Health has confirmed an England-wide evaluation rollout of newborn SMA screening starting at year-end, a policy change Nelson publicly campaigned for after her daughters’ diagnosis.
- The tube removal is an important caregiving milestone that eases daily contact and feeding care for the family while the twins remain under close medical monitoring and decisions about next treatments continue.