A mum has been left heartbroken after being told her daughter’s body is riddled with tumours – claiming doctors initially dismissed her concerns.
Tiffany McConathy, an advanced oncology certified nurse practitioner, first knew something was wrong when her ten-month-old daughter, Nora, developed weakened muscles on the right side of her face.
She was soon diagnosed with Bell’s palsy, a temporary disease that will normally resolve itself over time.
But the 35-year-old had a gut feeling there was something more sinister at hand and pushed doctors to do an MRI, which she claims they were at first reluctant to do.
That’s when they found the tumours, spread throughout the little girl’s body – with a very tragic end to her story.
“I felt Bell’s palsy wasn’t the right diagnosis and pushed for an MRI,” Tiffany, from Arkansas, US, who is also mum to five-year-old Zane, told NeedToKnow.co.uk.
“But the doctors were certain her symptoms would resolve on their own.
“I am sure they had their reasons for not wanting to do an MRI at first, but when taking all the clinical pieces and analysing them myself, something just didn’t feel right.
”After they told me about her tumours, I was completely shocked.
“Being in the line of work I am, I was also devastated.
“I knew what the odds were and they were not good, I knew there was a huge likelihood she wouldn’t make it.
“I decided I was going to spend every moment with her to the fullest and give her the best days that I could.”
Tiffany first noticed her daughter suffering from facial weakness in September 2021, with her and her husband, Jeremy, 35, immediately rushed, then one-year-old, Nora, to the hospital.
Following an assessment with a neurologist, she was diagnosed with Bell’s palsy and the family was later sent home.
But six weeks later, the little girl became extremely lethargic, refusing to eat and acting strangely – causing Tiffany to take her back to the hospital.
On 3 November, Nora underwent a biopsy, showing she had embryonal tumours with multilayer rosettes, an aggressive brain tumour affecting children under three.
Treatment began on 15 November with a port and gastric tube, three rounds of intensive chemotherapy, and a shunt due to the increased pressure on her brain due to the fluid.
She was scheduled in for a stem cell transplant but unfortunately developed asymptomatic Covid, causing the transplant to be delayed.
Tragically, months later on 19 February 2022, the little girl passed away.
Tiffany said: “I can literally replay moment by moment her last day and a half.
“At 12.36 am, her heart rate started to fall.
“12.38 am – that’s the time part of my heart died.
“She was the sweetest, most sassy, beautiful child.
“There were a plethora of emotions.
“I was relieved for her that she no longer had to suffer and ran into the arms of Jesus.
“I was numb, because how was I supposed to go on without a part of my heart?
“I was confused, how did this happen… Why was it so quick? What could I have done to prevent this?
“I have had to learn it is ok to have more than one emotion at a time.
“I spend most of my days happy but grieving, and that’s okay.”
In a bid to help other children suffering from rare cancers, Tiffany and Jeremy decided to have a research autopsy performed on Nora.
Unfortunately, this request was denied due to her positive Covid test.
She said: “The most unfortunate part about her death was that my husband and I wanted to research autopsy to allow for tissue sampling.
“Unfortunately, the hospital would not do her autopsy due to her COVID positivity.
“We wanted other babies to live.”
The couple started a non-profit foundation called Princess Nora’s Warriors, raising money and awareness for paediatric cancer research.
To date, they have raised £175,000 ($223,000).
She said: “One thing I have found since having a daughter diagnosed with cancer is the severe lack of funding for research in children.
“I hope to continue to raise money for research, as well as helping families financially, going through the hardest time of their lives.
“We hope to someday see a cure for pediatric cancers!”
Jam Press approached Arkansas Children’s Hospital, where Nora was treated, for the right to reply, but has not received a response at the time of publishing.
ENDS
