Gracey Stanton Campaign
I am mother to Slade and the grandparent to these twin girls.
Ashley and Slade Stanton conceived what they thought were twins however a third heartbeat was found by the Gynecologist and subsequently referred for a special scan which took place on the 9/5/2023 at the Fetal Assessment Centre. The scan then revealed triplets, two twin girls in a separate placenta to the boy however thought to have Twin-to-Twin Transfusion Syndrome (TTTS). The doctor strongly advised Ashley to see a specific specialist in Cape Town at Panorama Mediclinic (the only specialist in SA able to perform Laser therapy needed or perhaps restore normal circulation to the twins). This was undertaken however, Dr Pistorius confirmed that it was not TTTS but rather unequal placenta sharing of the twin girls (Emryn and Gracey). The boy, Sagan was in his own placenta. Gracey was much smaller than her sister and unlikely to survive to term. If he tried to intervene it could induce the birth and all of them would be at risk as it was too early and so the only choice was to monitor and let nature take its course, but he was quite confident Gracey was not going to survive full term. Ashley was able to carry them long enough until all three were born - Sagan was 1.6kg, Emryn 1.3kg and Gracey 804kg. Unfortunately, Sagan contracted a hospital acquired bug that resulted in a pneumonia, and he died 11 days after birth. We were absolutely devastated and have not fully come to terms with it yet as we seem to be getting hit with one thing after the next. The girls then started getting sick and so we moved them to Unitas hospital where they improved and began to thrive. Emryn reached a good weight and went home however Gracey took much longer due to her low birth weight. She has now been in Neonatal ICU for four months. It was noticed that she was not swallowing and so she underwent an MRI confirming a diagnosis of Pontocerebellar hypoplasia (PCH).
This is a group of rare heterogeneous conditions characterized by prenatal development of an abnormally small cerebellum and brain stem, which is usually associated with profound psychomotor retardation. Clinical features vary widely but associated with profound intellectual disability and delayed or absent psychomotor milestones like swallowing. In most cases, the disease is uniformly fatal early in life. Life span has ranged from death in the perinatal period to about 20-25 years of age. Only a few individuals-usually patients with PCH type 2-have survived to the second and third decades of life. It is extremely rare.
There are a number of challenges facing this family right now namely:
Ashley is on maternity leave at the moment and is due to return to work in January however when Gracey comes home in a few days she needs to be nursed full time by Ashley plus they have Emryn. Ashley needs a job where she can work from home, they can't afford a nurse. Ashley is a sales manager so please shout if you know of something where she can work from home.
They are so emotionally exhausted (trying to process one baby's death and now the prospect of another while looking after one at home). They have been driving from Edenvale to Unitas every day for 4 months to visit Gracey. Her monthly consumables are going to cost around 15k as Gracey needs special formula, she has a feeding tube, needs oxygen and suction 24/7. She will need many doctors' checkups to monitor her condition etc. They are having to source this machinery for home use as well.
To determine Gracey's treatment plan and life expectancy they need to confirm the type of Pontocerebellar Hypoplasia and so blood needs to go to New York for testing to confirm which will cost R28k.
As grandparents we are helping as much as we can, the medical aid is doing what they can but it doesn't cover everything - these two young parents who have been hit by wave after wave are battling for every cent right now and we appreciate any help that can be provided.
