Parental Instinct Can’t Be Ignored – Here’s One Family’s Story

Parents have an uncanny ability to understand all the little nuances that make their child who they are.

We love, nurture, and support them all their lives, and we have an instinct when something is wrong since we know them best.

This instinct has saved the lives of many children when parents – fueled by this instinct — have advocated for their health and safety, despite being dismissed by doctors.

Dan and Laura Wallenberg were like any other couple, enjoying their new baby and watching all of her exciting milestones and developments.

But when their little girl was five months old, the Wallenbergs noticed that something seemed “off” with their baby.

She wasn’t eating normally, and they just felt like something was wrong.  They made an appointment to check in with their pediatrician just to be safe.

As often happens with kids, their doctor dismissed it as a common virus and sent the family home.

After several days at home with no improvement – in fact, their daughter was getting worse – the Wallenbergs took her to the hospital. 

She was underweight and vomiting, but the doctors prescribed an anti-nausea medication, insisted it was a virus and sent them back home once again.

That evening, the baby continued to vomit and this time, Laura Wallenberg noticed what looked like blood on her daughter’s shirt.  They immediately rushed back to the emergency room.

This time, doctors did a full panel of tests and found that the baby’s electrolytes and potassium levels were dangerously out of the normal range.  Her potassium was so high that it threatened her life.

An ultrasound showed numerous kidney stones, yet doctors were baffled to see this in such a small child.  They finally ordered genetic testing.

The Wallenberg’s daughter was diagnosed with Hyperoxaluria Type 1, otherwise known as PH1, a rare genetic disorder that affects only one to three out of a million people.

About 20 percent of people with the disorder have a serious form in which symptoms appear shortly after birth.

Onset can occur at nearly any time in adulthood, but those cases are typically milder.  

The Wallenberg’s daughter had a severe form of the disease that affects the kidneys.  It is caused by a buildup of oxalate, which is typically filtered through the kidneys and leaves the body in urine.

In children with P1, the buildup causes kidney stones, blood in the urine, recurring urinary tract infections, and renal failure which can lead to death.

The Wallenbergs are thankful that their daughter was finally diagnosed and is being properly treated, and she has advice for every parent.

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“You can’t give up. You have to keep pushing,” she said, according to U.S. News and World Report.

Their little girl is six now and is doing well, though she may need a kidney or liver transplant as an adult.  But if they hadn’t insisted something was wrong, their little girl may not have made it.

There are nearly 7,000 rare diseases known to the medical community, and they only affect a small number of the population, making it difficult for doctors to come up with answers.

But parents know when their child is sick with a common virus, and when it’s something more.  

Trust your instincts, and be an advocate for your child.  You – and only you – know them best.

Have you ever had an instinct about your child’s health when doctors were dismissing your concerns?  Leave us your comments.

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