A four-year-old born with part of her brain growing outside her skull is thriving despite doctors giving her a slim chance of survival.
Worried doctors feared Isabella Grote would be unable to breathe on her own when she was born.
Her heartbroken parents, Sharlotte, 40, and Jim, 49, were told to prepare for the worst and warned she was likely to be severely disabled if she did survive.
A 20-week scan revealed Isabella had the rare birth defect, encephalocele, causing part of her brain to grow through an opening at the back of her skull.
The devastating prognosis left the couple, who have two other children, planning the funeral of their unborn baby girl.
She was born by Caesarean section and underwent lifesaving surgery when she was just three days old.
Just days after her fourth birthday, Isabella has hit all her milestones including walking and talking – something her parents feared they would never see.
Isabella Grote was born with a rare condition encephalocele, causing part of her brain to grow through an opening at the back of her skull
Doctors only gave her a 25 per cent chance of survival and even then warned she was likely to suffer from severe disabilities. But Isabella, pictured right with mother Sharlotte, has astonished doctors with her progress
‘We went along to our 20 week scan where everything went fine, but later on that evening I got a phone call from the doctor who told me that there was something wrong with our baby.
‘We were terrified, our baby was given a 25 per cent chance of surviving past her first few days and even then we were warned she may be severely disabled.
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‘Abortion was never an option for us, even if I could spend just a few minutes with my little girl I would be happy.
‘I called a funeral home to find out our options as we prepared ourselves for the worst.’
WHAT IS ENCEPHALOCELE?
Encephalocele is a rare type of neural tube defect which is present at birth and affects the brain.
The neural tube is a narrow channel that folds and closes during the third and fourth weeks of pregnancy to form the brain and spinal cord.
Encephalocele is a sac-like protrusion of the brain, and the membranes that cover it, through an opening in the skull.
It happens when the neural tube doesn’t close properly during pregnancy.
It occurs in about one baby in every 10,000.
Babies with the condition can also have a build-up of fluid in the brain, loss of strength in the arms and legs, an unusually small head, poor coordination, developmental delays, vision problems and fits.
Source: Centre for Disease Control and Prevention
The couple, from Minot, North Dakota, were referred to a specialist hospital in Minnesota, an eight hour drive away from their home.
Doctors successfully delivered Isabella a month before she was due.
‘The doctors were amazing and at only three days old they were able to successfully remove Isabella’s sac and insert the small part of her brain back inside her skull.
‘Despite not knowing if Isabella would have learning difficulties in the future, we felt so lucky that our little girl was alive.
‘She has just celebrated her fourth birthday and is doing amazing – she has hit all of her milestones including walking and talking and loves going to school.’
Encephalocele is a sac-like protrusion of the brain, and the membranes that cover it, through an opening in the skull.
The condition occurs when the neural tube, that forms the brain and spinal cord, does not close completely during early stages of pregnancy.
It affects 1 in 10,000 babies in the US born every year.
Isabella’s parents were told their daughter had a slim chance of surviving birth.
Even then, she would only be given a 50 per cent chance of surviving past her first few days.
‘At first doctors didn’t know how much of her brain would be affected but a full MRI scan later revealed that some brain matter was growing outside of her skull.
Isabella, pictured here before surgery to remove the sac, needing lifesaving surgery at just three days old
Mother-of-three Sharlotte holds and feeds baby Isabella in hospital after surgery to remove a sac of fluid and part of her brain
Isabella’s parents Sharlotte and Jim (left) hold her days after she was born with the fluid-filled sac on the back of her head
‘They told us that if she did survive she may be severely disabled and may never be able to walk or talk.
‘I was heartbroken and felt deeply depressed.
‘I had regular check-ups throughout my pregnancy and moved our family to Minnesota a month before our due date so we could be close to specialist facilities.
‘On May 4, 2012, doctors delivered Isabella by emergency C-section after she hadn’t grown in two weeks.
‘Seeing her for the first time I was terrified, all I could see was this sac on the back of her head.
‘Doctors told us that there was less brain matter in her sac than originally thought, which was such a relief.
‘At three days old she went into surgery to have the sac removed but we still didn’t know whether she would make it.
‘Luckily the surgery went amazing, there was mostly fluid in the sack and we were informed Isabella had no other obvious abnormalities.
‘Doctors were even able to place the small part of her brain back into her skull – we couldn’t believe it.’
A scan at 20 weeks revealed Isabella had the birth defect but her parents never gave up hope on her surviving
Despite her poor prognosis, Isabella has thrived as she’s reached the age of one (left) and two (right). Now four years old, she is attending pre-school and playing with dolls
After 13 days in the NICU, they were able to take their little girl home.
They faced an anxious future as they still didn’t know whether she would be able to walk or talk.
Miraculously Isabella started to make huge progress sooner than expected.
At around nine months old she was able to sit up by herself and at 18 months she took her first steps.
Isabella’s speech was slow at first but improved massively when she went to pre-school age three and was soon able to talk in full sentences.
Despite two surgeries at the age of two and three to correct vision problems, Isabella is a picture of health.
‘We feel truly blessed to have our beautiful little girl with us today. She has been through more than most people have to go through in a lifetime,’ said Mrs Grote.
‘She is just like any other four year old, she loves playing with her dolls and is so loving and caring.
‘She is such a fighter’