Help Illiondale family save their baby; Gracey

When Ashley and Slade Stanton from Illiondale were told they were pregnant with not one but three babies, they looked at each other in shock.

“We were in disbelief. You only ever hear about these things on TV and we couldn’t believe it was happening to us. We were also scared because we were thinking about how we were going to manage three babies at the same time.

“Once the shock wore off, we realised what a blessing it was, and we were excited to see how everything was going to go. This was before we found out that we had unequal placenta sharing,” said Ashley.

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“I gave birth to triplets named Sagan, Emryn and Gracey Stanton on July 20.

“The two twin girls were in the same placenta even though they were diagnosed with unequal placenta sharing. This meant that Gracey was 50% smaller than Emryn,” she said.

Ashley’s pregnancy was so complicated that she was told that she might lose Gracey before birth. But her prayers were answered and Gracey lived.

Sadly, 11 days after the birth of the triplets, Sagan contracted a bug from the neonatal ICU and died.

“They moved the two twin girls to Unitas Hospital. Emryn picked up weight and eventually went home. However, Gracey remained in hospital for some time.

“It eventually became evident that Gracey had difficulty swallowing and controlling secretions and at four months, she underwent an MRI which confirmed a diagnosis of pontocerebellar hypoplasia (PCH).”

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PCH is a group of rare heterogeneous conditions characterised by prenatal development of an abnormally small cerebellum and brain stem, which is usually associated with profound psychomotor retardation.

Although the clinical features vary widely, PCH is usually associated with profound intellectual disability and delayed or absent psychomotor milestones.

In most cases, the disease is uniformly fatal early in life. The life span has ranged from death in the perinatal period to about 20 to 25 years.

Only a few individuals, usually patients with PCH type 2, survive to the second and third decades of life.

“Gracey urgently needs to get her blood tested in the USA to determine which type of the disease she has to determine longevity and what care she would need going forward.

“This is extremely costly at around R30 000. Our medical bills to date are around R45 000 and we expect them to grow as we move Gracey home with oxygen and suction,” said Ashley.

To help cover the growing costs, the family pleads for help from the community through donations and prayers.

The family urgently needs donations to cover the costs of Gracey’s home care including oxygen, suction machine and saturation monitor.

“We urgently need all the help we can get, as we cannot get Gracey home until we can get a suction machine and we are still awaiting approval from the medical aid.

“She has a peg tube inserted for her feeding, as she cannot swallow. We will also need the tubes and syringes to give her food and medication.

“At the moment, the medical aid is only covering so much, but we are looking at around R50 000 to cover expenses.

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“We will also need to get a nurse to help out, as I cannot afford not to work. We would need around R25 000 a month to pay for a part-time nurse to look after Gracey when I cannot.”

wwAshley said her daughter named herself.

“When we found out about the complications and that there was a chance we might lose her, we were talking about God’s grace. On the way home from the doctor we just started calling her Gracey as we already had names for her siblings, Emryn and Sagan.

“When I look at her, I see God’s grace. I see how strong she is and how far she has come, and it glorifies how good God is,” said Ashley.

The couple said they wished they could make a bed on the floor next to her in the hospital to stay with her.

“It was surprisingly easier when both girls were in hospital, as I could spend the whole day to be with them. It’s so hard to even talk about the whole experience, it’s even harder when I think about my late son,” said Slade.

“It is overwhelming. Our babies are so precious and it inspires us to be strong and keep pushing for them. If you look at Gracey, she is a breath of fresh air,” he said.

The couple said losing their son has been difficult and overwhelming.

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“As a mom, I was completely broken, but I did and do not have the luxury to break down as my girls need me to be strong for them,” she said.

“We miss our son. It is a hole in our lives and I believe only parents who have lost a child will truly understand such pain.

“When we found out about Gracey, we were heartbroken, but she is a little girl who has defied every challenge that has come her way and we have a lot of hope that she will overcome this too. Even though it is a diagnosis that is devastating, she still has that spirit that continues to fight.”

Ashley and Slade said they could not wait for Gracey to return home.

“We can then be a complete family and Emryn can get to be with her twin sister.”

The family has started a BackaBuddy page to be found by searching www.backabuddy.co.za for Slade and Ashley’s Triplet Journey.