Young spina bifida patient’s surgery postponed third time due to COVID hospitalizations

An unfortunate result of the ongoing COVID-19 pandemic is that hospitals are once again filling up, forcing the cancellations of urgent surgeries for children with birth defects.

Bella Parkin, 11, of Salt Lake City has been waiting eight months for spinal surgery to relieve her constant pain due to spina bifida. Bella was born with spina bifida and has severe scoliosis. Her spinal cord gets rare tumors, is split in two, and is tied in a knot near the top.

Spina bifida is the most common permanently disabling birth defect. About 166,000 people in the United States have spina bifida, which is a type of neural tube defect that occurs when a baby’s neural tube fails to develop or close properly.

Spina bifida means split spine. It typically occurs within the first month of pregnancy while the neural tube is forming, before a woman knows she is pregnant. It is commonly referred to as the “snowflake condition” of birth defects because no two cases are the same. Spina bifida can range from mild to severe, and the severity depends on everything from the size of the opening to the location on the spine.

“I have a lot of anxiety having to wait, and with that anxiety, it’s hard for me to eat and to get a good night’s rest,” Bella told KUTV in Salt Lake City. 

Intermountain Healthcare has temporarily canceled non-emergency inpatient and outpatient surgeries because COVID-19 patients have exhausted hospital space and staff.

Falynn Parkin, Bella’s mom, said Bella is in constant pain and these conditions can hinder her breathing and prevent her heart from fully inflating. Surgeries can drastically help, but the three surgeries that Bella needs must be done in order. Her most recent surgery was initially scheduled for Nov. 5, but postponed a third time.

“It’s hard to see your kid that’s always in pain, and if I could, you know, I would take her place because it’s hard to watch, and it just seems so unfair,” Falynn said. “It’s hard to watch your little kid asking, ‘when can I feel better, when can they help me?’ And I don’t know the answer to that.”

Falynn and Bella have to quarantine for more than a week before each scheduled surgery, which is time Bella misses school and work Falynn misses that she doesn’t get paid for.

Utah currently has one of the highest case counts per 100,000 residents in the country, which is one of the reasons Intermountain Healthcare said they’ve had to delay non-emergency procedures.

An Intermountain spokesman said COVID patient volumes are currently exceeding normal winter surges, and they said the surgery delays are to keep the patients they are treating now safe.

Intermountain is asking the community to help by getting vaccinated against COVID-19.

Spina bifida can also be caused by a parent’s exposure to toxic chemicals in the environment or workplace, either before or during pregnancy. Because hazardous chemicals are used in many workplaces, toxic exposure is potentially very common in the US. Women who are old enough to become pregnant should take folic acid before and during the first three months of pregnancy to help prevent having a baby born with spina bifida. Because half of the pregnancies in the United States are unplanned, the Spina Bifida Association asks women to take a vitamin with 400 mcg (0.4 mg) of folic acid each day during the years of their lives when they are possibly able to have children.

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