Untreated jaundice leads to brain damage

60% of all newborns have jaundice … the experience of one mom whose child was left undiagnosed, untreated

My son, Cal, was born a healthy baby boy on March 23, 1995 in a large accredited hospital that delivers over 5500 newborns a year. Cal was first noted to be jaundiced through visual assessment at 16.5 hours old, but a bilirubin test was not done.

Cal’s skin was described to be jaundiced again through visual assessment when he was 23 hours old, but a bilirubin test was not done. Cal was discharged from the hospital when he was 36 hours and was described as having head to toe jaundice, but a bilirubin test was not done. Neither was his blood typed or a Coombes test performed.

Cal and his mom

Cal and his mom
The information we received about jaundice was a simple brochure that never mentioned jaundice can cause brain damage. It was also suggested that we put Cal in the window for sunlight.

We were assured that Cal’s jaundice was normal and not to worry. We scheduled a routine follow up visit, for 7 days of age, with his pediatrician.

DAY 4:

On day 4 Cal started to breast feed with a weak suck and became lethargic. I called the newborn nursery and told them that he was “still yellow, lethargic and was feeding poorly.” They asked me if I was a “first time mom” and then assured me there was no concern since sleepiness is to be expected. They told me to unwrap him and tickle his feet and if that didn’t work to call the pediatrician.

We immediately took Cal to the pediatrician and he noted the jaundice by visual assessment. A bilirubin test was not done. We were told to wait 24 hours to see if he would improve.

DAY 5:

At 5 days of age, the pediatrician admitted Cal to the pediatric unit. Cal’s bilirubin was tested for the first time and it was 34.6mg/dl. An exchange transfusion, however, was not performed since the doctors recalled a recent “raising of the bar” from 20mg/dl to 30 mg/dl. Treatment was limited to phototherapy… and that phototherapy failed Cal.

DAY 6:

On day 6 in the afternoon, Cal had a high pitched cry, respiratory distress, increased tone and he started to arch his neck in a way that is characteristic of opisthotonos; these behaviors were all acute symptoms of kernicterus.

Little did I know that my newborn son was suffering brain damage before my eyes and in my arms. I will be haunted by that memory and my failure to protect him forever.

18 MONTHS:

At 18 months of age Cal was diagnosed with classic, textbook kernicterus. Cal has athetoid cerebral palsy throughout his body, neurosensory hearing loss, enamel dysplasia on his front teeth and crossed eyes and other abnormalities.

THE AFTERMATH:

Today Cal cannot walk independently, his speech is impaired, he drools, and he has uncontrollable movements of his arms and legs just to describe his impairment a bit. When Cal gets sick he is reduced to the functional level of a 6 month old. Despite his limitations, Cal is a beautiful and inquisitive young man. He loves playing on the computer, swimming, his sister and Pokemon! He also enjoys creating movies, short stories, and poems.

Two and a half years after Cal’s birth we were blessed with the birth of our daughter, Mackenzie. At 16.5 hours, exactly the same timing of jaundice onset as Cal, jaundice was noticed. A bilirubin test was performed immediately and phototherapy was deemed necessary and initiated. Today we have a healthy daughter.

Cal’s brain damage was totally preventable and is the result of a tragic failure of the medical system. Unfortunately, the real tragedy is that Cal’s story in NOT unique. His story has replayed itself several times over the past decade.

Before Leaving the Hospital
Some babies with jaundice might look yellow or even orange, but it is not possible to see jaundice in all babies, especially those with darker skin color. Your baby should be checked for jaundice in the hospital and again within 48 hours after leaving the hospital.

A – C – T

Ask your baby’s doctor or nurse about a jaundice bilirubin test.

Create a follow-up plan before leaving the birth hospital. All babies 3 to 5 days old should be checked by a nurse or doctor, because this is usually when a baby’s bilirubin level is highest. The timing of the follow-up visit will depend on how old your baby is when you leave the birth hospital and on any other risk factors. Babies with jaundice in the first 24 hours of life or with high bilirubin levels before hospital discharge should have an early follow-up plan.

When to Get Help
See your baby’s doctor the same day if your baby:

Is very yellow or orange (skin color changes start from the head and spread to the toes).
Is hard to wake up or will not sleep at all.
Is not breastfeeding or sucking from a bottle well.
Is very fussy.
Does not have enough wet or dirty diapers.
Ask your baby’s doctor or nurse about a jaundice bilirubin test.

Get emergency medical help if your baby:

Is crying inconsolably or with a high pitch.
Is arched like a bow (the head or neck and heels are bent backward and the body forward).
Has a stiff, limp, or floppy body.
Has strange eye movements.
If your Baby has Jaundice
It is important to take jaundice seriously and stick to the follow-up plan for appointments and recommended care.

Your baby might be put under special blue lights (phototherapy) to lower the bilirubin level. You should not put your baby in direct sunlight; this is not a safe treatment for jaundice and could cause sunburn. A baby with a very high bilirubin level might need a blood transfusion in the hospital.

Make sure your baby is getting enough to eat. The process of removing waste also removes bilirubin in your baby’s blood. If you are breastfeeding, you should nurse the baby at least 8 to 12 times a day for the first few days. This will help you make enough milk for the baby and will help keep the baby’s bilirubin level down. If you are having trouble breastfeeding, ask your doctor, nurse, or a lactation coach for help.

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