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A four year old girl who was born with her brain outside her skull makes a miraculous recovery

An adorable four year old born with her brain growing outside her skull has made a miraculous recovery – and she is now hitting all her milestones.

Baby Isabella in hospital before her surgery

Baby Isabella in hospital before her surgery


Isabella Grote, from Minot, North Dakota, USA, was born with a rare birth defect – Encephalocele – causing part of her brain to grow through an opening at the back of her skull.

Doctors told distraught parents, Sharlotte, 40 and Jim Grote, 49, to prepare themselves for the worst as their baby was given slim odds of survival.

And even if their baby did survive, there was a high chance of it being severely disabled and unable to breathe unaided.

Heart broken, mom-of-two, Sharlotte, began planning the funeral for her unborn baby girl.

But Sharlotte refused to give up on Isabella, and at only three days old, she was given a lifesaving operation to remove the sac and place the separated brain into her skull.

Now just days after her fourth birthday, Isabella has hit all her milestones including walking and talking – something Sharlotte and Jim feared they would never see.

Sharlotte, a full time mom, said: “Jim and I already had two children, Landon, seven, Caleb, five, and wasn’t planning to have another but when I found out I was pregnant with Isabella we were thrilled.

“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.

Isabella's brain was born outside her skull

Isabella’s brain was born outside her skull


“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.

“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.

“We were referred to a specialist hospital in Minnesota, an eight hour drive away from our home in Minot, where doctors successfully delivered Isabella a month before my due date.

“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.”

Baby Isabella was diagnosed with Encephalocele – a rare birth defect that affects 1 in 10,000 babies in the US born every year.

The condition occurs when the neural tube, that forms the brain and spinal cord, does not close completely during early stages of pregnancy – causing a sac-like bag at the back of the brain.

Isabella’s parents were told their daughter had a slim chance of surviving birth and even if she did survive that far then she would only be given a 50 per cent chance of surviving past her first few days.

Isabella with her parents and siblings

Isabella with her parents and siblings


She added: “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.

“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!”

Isabella is hitting all her milestones

Isabella is hitting all her milestones


After 13 days in the NICU, the worried parents were able to take their little girl home. But at that point 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 as soon as she started pre-school at the age of three she made huge improvements and was soon able to put whole sentences together.

And despite having had two surgeries at the age of two and three to correct vision problems, Isabella is a picture of health.

Sharlotte said: “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.

“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!”


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