Both my twins were diagnosed with cancer as newborns… a small detail in photos was the first sign

Maryann Oakley was enjoying the new bliss of motherhood after giving birth to her twin girls in 2017 when she received devastating news that is every parent’s worst nightmare: both of her newborn daughters had cancer.

What came next was years of hospital visits, relapses and immense pain and trauma for the little girls.

Oakley, from Harrisburg, Pennsylvania, laid bare the horrifying ordeal exclusively with the Daily Mail – and shared the small detail others should look out for in photos that could be an early sign of the gruesome disease.

She explained that aside from them being born ‘slightly jaundiced,’ everything seemed completely normal when she gave birth to her twin girls Eve and Ella in December 2017.

But just 11 days after they were born, her daughter Eve ‘abruptly stopped eating’ and started ‘crying nonstop.’ 

‘It wasn’t a normal cry, it seemed off. She was in pain,’ recalled Oakley. 

They rushed the infant to the hospital, where she went downhill – and fast. Her vitals began to ‘fade away’ and she started turning ‘gray’ as ‘doctors struggled to figure out what was wrong.’

‘It was an extremely scary sight. She was hooked up to so many machines. She only weighed about four pounds,’ Oakley continued. ‘It was really unimaginable.’

Doctors had to do emergency surgery on her abdomen after discovering that her bowel was ‘severely twisted,’ something known as a volvulus.

‘A portion of the bowel was removed and an ostomy bag was placed,’ Oakley explained. 

‘[After that] she suffered septic shock, cardiac arrest, organ failure, blood clots, seizures and so much more. 

‘Neither myself nor the doctors knew if she would pull through at this point, and the cancer hadn’t even been found yet.’

Eve was put on life support, and doctors performed a series of tests to try to determine what had caused the volvulus.

And soon, they discovered cancerous tumors behind her eyes.

‘It was indescribable,’ Oakley said of how it felt to hear the news. ‘Our lives were turned upside down, we were devastated.’

Eve had retinoblastoma, a rare malignant tumor of the retina. Doctors decided to check Ella as well, as it is very rarely linked to inherited genetic mutations in the RB1 gene, which affects identical twins. 

‘We were hoping Ella would be spared of this horrible cancer, but that was not the case,’ Oakley said. 

‘We were again completely devastated, but tried to be strong for our girls.’

As this type of cancer is ‘quite aggressive,’ Oakley explained that Ella started chemotherapy within days. Eve, on the other hand, was ‘too sick to start right away.’

But in only a few days, Eve’s tumor ‘doubled in size’ so they decided to push forward with her treatment.

‘She had a lot of complications during treatment. Blood clots, infections, allergic reaction to the chemotherapy, she could barely tolerate feeds with an ostomy and a feeding tube,’ Oakley shared.

Soon after their diagnosis, Oakley was looking through photos of her little girls when she noticed something: there was a white reflection in their eyes.

Normally, people’s eyes have a red reflection from the flash of a camera, but, according to the Cleveland Clinic, ‘The earliest and most common symptom of retinoblastoma is the pupil of your eye appearing white or pale-colored in certain settings, especially seen in photos taken in dim places that use a flash for illumination.’

After six months of grueling chemotherapy, the girls were declared cancer-free, but their health battles didn’t end there.

Ella has since relapsed once, while Eve has relapsed twice, with the last time being just a year and a half ago.

Even now, they are not considered ‘stable’ and there is still a huge risk for another relapse.

Eve has hearing loss paired with auditory neuropathy, which Oakley said was most likely caused by the medications she was given while in septic shock.

She is also still grappling with the effects of missing a portion of her bowel and has permanent high blood pressure caused by her kidney failure. 

‘She has little speech due to the hearing loss and auditory neuropathy. This has really been a struggle as well,’ added Oakley.

In addition to having to see her girls suffer, Oakley said the financial aspect of their cancer battle has been ‘devastating.’

She had to cut back on her work to bring her daughters to and from appointments and admitted that they ‘struggle daily’ to pay bills. 

Oakley has been documenting their extensive health battles on her Instagram, where she has racked up more than 138,000 followers.

It’s now her ‘mission’ to ‘raise awareness around childhood cancer.’ 

‘I started posting about their journey to update family and friends, and it just grew from there,’ she explained. 

‘I started to connect with other families whose children are also diagnosed with the same cancer.

‘If I can help just one child, then my heart feels so full and grateful. Each cancer journey is different, but we, as families, all hold that common denominator.’

In the end, she said ‘hope’ is what got them through their darkest days, and she hopes to spread that to others.

‘I hope others read our story, and it may help to not give up hope on their situation,’ she concluded.