10 years ago, parents I know whose infant had Trisomy 18 had to bring their case to a hospital ethics board to push for surgery for their child.
Today, not only are children with congenital conditions covered by the country's insurance plan for large hospital bills, they announced this in the news:
Excerpt:
"The other area now covered by MediShield Life is surgical operation for those suffering from two rare, life threatening conditions – Trisomy 18 (where the infant has an extra chromosome) and alobar holoprosencephaly (where the brain fails to divide properly into right and left hemispheres).
MOH said surgical interventions for these conditions were previously excluded from MediShield Life coverage as treatment was not effective, but more recent international studies have shown that surgical interventions can now improve the quality of life and survival of patients."
For certain, Vera's early g-tube surgery, fundoplication, cleft surgery, adenoid surgery, and biPAP suppport have tremendously improved her quality of life and given us 10 years of her unbridled joy and company.
The work of the warrior parents I know advocating over the years, working to get such studies published have not gone unnoticed.
Dear Vera and Leona, the tide turned during your lifetime. It turned during your lifetime.
2 comments:
Hi Yin May, I'm so blessed by your blog. Can we connect? I'm a new mother of a T18 baby girl named Joyance. She's born 1st April this year.
Blessings,
Kathy
I have been a reader for several years (special ed teacher) and it's been almost a year since you blogged. Hoping all is good and stable with Vera. Would love an update! Laurie
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