WIBU To repost with a new title to see if I get more responses

[Ferfecksackmammy]

Britain currently screens for 9 conditions on the heel prick test that is done about 5 day after birth.
The UK is way behind a lot of European countries where they screen for many more (Italy screens for 48) .

I am particularly interested in Spinal Muscular Atrophy as this is a condition my son has and as a consequence is a full-time wheelchair user, uses Bipap at night and wears a spinal brace. There are treatments available for this condition and as it is a degenerative disease early intervention is key. There have been cases of children treated shortly after birth that have no symptoms at all.

My son currently is under the care of 3 consultant's and regularly sees two different physio therapist, occupational therapists, 2 different orthotists and many more health professionals.

There are 3 treatments available and all stop the progress if the disease.

AIBU to think that it makes complete sense to add this condition to the heel prick test?

YANBU.
I completely agree OP and know first hand other countries test FAR more, but have different health systems.
The NHS is on its knees and testing here is far less than when I've lived elsewhere. I'm sorry to hear about your child, but don't know the answer, without knowing the costing of the actual testing vs life long implications etc? How common is the condition in the UK?

Since June 2018 there have been around 300 children diagnosed with SMA. They will all receive one of 3 treatments and a varying degree of additional services. The lack of newborn screening is extremely short sighted.

I agree, my daughter was born with an infection passed from me to her. An apparent common infection which isn’t at all harmful, unless passed from mother to unborn child. Had we been screened, we could have started treatment and reduced the risk of her complications. Not to mention being properly educated on it, even now Drs don’t seem to have a lot of knowledge on it. Instead I was told to google it 🤯

YANBU
A family member had a condition that is screened for picked up on the heel prick test, and treatment started, long before it would otherwise have been diagnosed

YANBU sadly the NHS does the bare minimum

But the thing is that my sin receives amazing care from the NHS which costs £££££ and will continue.

SMA uk and the genetics alliance are campaigning to have SMA and others added to new born screening. It would cost a lot less long term to treat early then wait for symptoms to show as this stage the damage is done and is irreversible.