A two-week-old premature baby is a complete puzzle to doctors after being born 17 weeks early with a significant and mysterious tumor on her brain stem.
Addison Faith Richburg was born in a hospital in Manning, South Carolina on August 12, just 33 weeks into her mother’s pregnancy.
But before she was delivered doctors noticed her head had already grown to the size it should be at 39 weeks into pregnancy.
Suspecting fluid reservoir on the brain, doctors did scans and realized that Addison had hydrocephalus, meaning a buildup of cerebrospinal fluid in the brain.
As soon as she was delivered she was taken in for an MRI to look at the reason for the fluid buildup and found that she had a large tumor at the base of her brain.
At first doctors told them it looked like an incurable brain tumor that is normally found in older children and has a nine-month life expectancy at best.
Just as the family was starting to come to terms with that news, doctors backtracked and said they could be wrong.
And now, two weeks after Addy’s parents are still desperately waiting for answers because she is too weak to be taken in for a biopsy.
Addison Faith Richburg was born on August 13, just 33 weeks into her mother Brandy’s pregnancy
Before she was delivered doctors noticed her head had already grown to the size it should be at 39 weeks into pregnancy
When Addy’s mother woke up on August 12 it was just a normal Saturday morning.
‘I went to use the bathroom and noticed that I’d lost my mucus plug,’ Brandy told Daily Mail Online.
‘I decided to get online to make sure that was fine, and there were different websites telling me different things. But one of my nurse friends told me I should probably head to the hospital and get checked out, so I did.’
When she first arrived at the hospital nurses told Brandy that things were probably normal and because she wasn’t experiencing any contractions or feeling pain.
She then went into screening with her obstetrician who, upon examining Brandy, saw that she was three inches dilated and was in pre-term labor.
‘I was shocked because I wasn’t expecting it and still wasn’t having any contractions or anything,’ Brandy explained.
Before they took her into the operating room, the OB did an ultrasound to check on the baby’s measurements.
‘The doctor noticed her head was the size it should be for 39 weeks even though I was only 33 weeks along,’ she said.
‘They said she had hydrocephalus, meaning that there was a collection of liquid in her brain, and immediately things changed and they took me in an ambulance to the Medical University of South Carolina.
‘I started to get really worried at that point because I could see the looks on all of the nurses and doctors faces.’
As soon as Addy was delivered she was taken in for an emergency MRI to determine the cause of the hydrocephalus
Brandy, who has scoliosis which prevents her from giving natural birth, had to have a cesarean. Because it was an emergency she was put out for the whole procedure.
As soon as Addy was delivered she was taken in for an emergency MRI to determine the cause of the hydrocephalus.
She weighed four pounds and was just 17 inches long.
Doctors then came back and told her parents that Addy had a large tumor on the base of her brain, which is what had caused the hydrocephalus.
Because of her size doctors still aren’t sure what the tumor is, and haven’t begun to operate on it.
Initially they thought it might be diffuse pontine glioma (DIPG), a rare and highly aggressive tumor found at the bottom of the brain stem.
DIPG is incurable and puts pressure on an area of the brain called the pons, which controls functions such as breathing, blood pressure and heart rate.
The disease is incurable and most children with this type of cancer die within nine months of the first diagnosis.
It is most commonly diagnosed in children between the ages of five and nine, so if it were a DIPG Addy would likely be the youngest case of the tumor ever seen.
The Tuesday following her birth Brandy and her husband Josh started to lose hope.
The parents had been told that their daughter likely had an incurable brain tumor and saw her life slipping away before it had even started.
‘It was when she was the worst, she wasn’t moving and just looked completely lifeless. There was no color in her face,’ Brandy explained.
Doctors then came back and told her parents that Addy had a large tumor on the base of her brain, which is what had caused the hydrocephalus
But the next morning things started to look up.
‘Overnight things just changed. She got a lot of color back in her skin and started eating better and using the bathroom better. She would move her hands and feet when we would touch her,’ the mother said.
Seeing her progress gave the family hope, Brandy said, but they were still worried about the possibility had DIPG.
On August 22, Addy had her first followup MRI that showed that the tumor had begun to shrink, albeit minimally.
That news caused doctors to backtrack on their original diagnosis, leaving the family with even fewer answers.
‘The doctors don’t think it’s DIPG anymore because it did shrink a bit and that doesn’t happen with one of those tumors, so now they just have no idea,’ Addy explained.
The next MRI is on August 30, and results from that will determine when they can biopsy the tumor to test it.
Until then, her parents will remain in the dark as to what is ailing their baby girl.
‘Doctors are putting it off for as long as they can because she is so small,’ Brandy explained.
‘They have been really wonderful with getting the news to us and just with everything.
‘They are always tell us that Addy is a mystery baby and that they are just trying to put together all of the pieces of the puzzle until they can figure out what is wrong.
‘Not knowing what it is or what it could be is terrible. It’s so scary. We just have to keep hoping and praying the tumor will keep decreasing in size.’
The next MRI is on August 30, and results from that will determine when they can biopsy the tumor to test it. Until then, her parents will remain in the dark as to what is ailing their baby girl
Until they can start actually treating the tumor, doctors are taking other approaches to treat some of the symptoms.
The tumor and the hydrocephalus have caused bleeding in her brain that has dripped down her spinal cord. Because of that it’s incredibly swollen, making it hard for Addy to move and increasing the risk of infection.
Doctors are starting the baby on an intense course of steroids to reduce the swelling, and she had fluid removed from her brain every day via a reservoir at the top of her head.
‘The steroids are going to raise her heart rate which is terrifying,’ Brandy explained.
‘But we know it’s the only course of action right now so we are just counting our blessings and trying to remain positive.’
Because their home is 43 miles away from where Addy is being treated and they are spending so much time at the hospital, the family is crowdfunding to help cover the expenses.