Noticias y Articulos
Kernicterus
El kernicterus es causado por niveles muy altos de bilirrubina, un pigmento amarillo que se crea en el cuerpo durante el reciclaje normal de los glóbulos rojos viejos
Es una afección neurológica poco común que ocurre en algunos recién nacidos con ictericia severa.
Los niveles altos de bilirrubina en el cuerpo pueden hacer que la piel luzca de color amarillo, lo cual se denomina ictericia.
En algunos casos, cuando hay niveles sumamente altos de bilirrubina en el cuerpo o el bebé está extremadamente enfermo, la sustancia se movilizará por fuera de la sangre y se acumulará en el tejido cerebral. Esto puede llevar a complicaciones neurológicas serias, incluyendo daño en el cerebro e hipoacusia.
El kernicterus normalmente se desarrolla en la primera semana de vida, pero puede observarse hasta la tercera semana. Los recién nacidos con enfermedad hemolítica del Rh que puede llevar a hidropesía fetal están en alto riesgo de presentar ictericia grave que conduce a esta afección. Sin embargo, el kernicterus se ha visto en bebés aparentemente saludables.
Síntomas
Los síntomas dependen de la fase del kernicterus.
Fase temprana:
· Ictericia extrema
· Ausencia del reflejo de sobresalto
· Alimentación o succión deficiente
· Somnolencia extrema (letargo)
Fase media:
· Llanto chillón
· Espalda arqueada con cuello muy extendido hacia atrás
· Fontanela (punto blando) que protruye
· Convulsiones
Fase tardía (el síndrome neurológico lleno):
· Hipoacusia de alta frecuencia
· Discapacidad intelectual
· Rigidez muscular
· Dificultades del lenguaje
· Convulsiones
· Trastorno de movimiento
Pruebas y exámenes
Un examen de sangre mostrará un nivel de bilirrubina alto (mayor a 20 - 25 mg/dL).
Esto puede llevar a complicaciones neurológicas serias, incluyendo daño en el cerebro e hipoacusia
Nota: los rangos de los valores normales pueden variar ligeramente entre diferentes laboratorios. Hable con el médico acerca del significado de los resultados específicos de su examen.
Tratamiento
El tratamiento depende de la edad del bebé (en horas) y si éste tiene cualquier factor de riesgo (como prematuridad). Puede incluir:
· Terapia con luz (fototerapia)
· Exanguinotransfusiones
Pronóstico
El kernicterus es una afección seria y su pronóstico es reservado. Muchos bebés con complicaciones del sistema nervioso en etapa tardía mueren.
Posibles complicaciones
· Daño cerebral permanente
· Hipoacusia
· Muerte
Cuándo contactar a un profesional médico
Busque ayuda médica inmediata si su bebé tiene signos de esta afección.
Prevención
El diagnóstico y tratamiento oportunos de la ictericia o afecciones que lleven a ésta pueden ayudar a prevenir esta complicación. La Academia Estadounidense de Pediatría (American Academy of Pediatrics ) recomienda que se le midan los niveles de bilirrubina a los bebés con los primeros signos de ictericia, dentro de un período de 24 horas. Si el nivel es alto, el bebé debe ser examinado para buscar enfermedades que involucran la destrucción de los glóbulos rojos (hemólisis).
La asociación también recomienda que todos los recién nacidos tengan una cita de control dentro de los 2 a 3 días después de salir del hospital, lo cual es particularmente importante para los bebés prematuros o cercanos al término.
Nombres alternativos
Encefalopatía bilirrubínica
FUENTE: MedlinePlus
Co.globedia.com [Internet]. Kernicterus. Dra Kandelah. El diario colaborativo. 29 de Abril de 2013. [Fecha de consulta: 18 de Noviembre de 2014]. Disponible en: https://co.globedia.com/kernicterus
Call for new baby jaundice checks |
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All newborn babies should be checked for jaundice to prevent unnecessary deaths from a related brain disease, says England's Chief Medical Officer. In his annual report, Sir Liam Donaldson called for more advice for parents about the warning signs of kernicterus. He also asked the government to consider offering a screening blood test to all new babies. Kernicterus can be avoided completely if newborn jaundice is spotted early. Severe jaundice It is damage to the brain caused by the abnormal build up of one of the body's waste products, bilirubin. Bilirubin is produced by the breakdown of red blood cells, which occurs more rapidly in newborn babies. If more bilirubin is produced than the liver can break down and remove from the body then it can deposit in various places, including the brain, where it can cause cerebral palsy, and the skin and eyes, which it turns a yellow colour.
It is normal for newborn babies to have slightly raised bilirubin levels, which causes varying degrees of jaundice, because their livers are immature. Indeed, jaundice is common in breastfed babies. About 80% of premature babies and 50% of full-term babies develops jaundice in their first few days of life. In most cases the jaundice will disappear after a couple of weeks and no specific action is needed. However, jaundice can be more serious and bilirubin can reach toxic levels, leading to kernicterus, which can cause long-term brain damage and even death. Warning signs Although kernicterus is fairly rare - it currently affects about one in every 100,000 newborn babies in the UK - its incidence appears to be increasing. Also, it can have a devastating impact on the child and family concerned. In the last two years, 14 cases of kernicterus were reported in the UK. Four of these babies died and six have long-term neurological and developmental problems. From studying these cases and others, experts say that kernicterus rarely occurs 'out of the blue' and that there are warning signs.
The baby may become sleepier and more difficult to rouse, they may have abnormal muscle tone and develop head, neck and spine spasms and may experience seizures. The jaundice that can lead to kernicterus often develops in the first 24 hours of life. Dehydration and inadequate breastfeeding are often linked and there may be other medical problems associated, such as infection, prematurity, severe bruising related to delivery and diseases that cause an abnormal turnover of red blood cells. Experts believe part of the reason why kernicterus cases are increasing and being missed is that women and their newborn babies are increasingly being discharged from hospital very soon after delivery, sometimes hours later. This can be before jaundice has peaked and breastfeeding might not be properly established, leaving some babies at risk of kernicterus. Guidance Also, there is no standardised protocol or guidelines for medical staff to follow to prevent kernicterus. Although jaundice can be picked up by examining the baby, this is not reliable and it can be masked in darker-skinned babies. Testing blood bilirubin levels can detect which babies need treatment. Sir Liam said: "We need to raise awareness among health professionals and parents to help tackle this preventable disease. "I would like to see a national register of kernicterus, education and training programmes for health professionals, explicit advice for parents on what to look out for when they leave hospital and finally I would ask the National Screening Committee to consider the cost effectiveness of a bilirubin blood test to help identify the risk of kernicterus." The National Institute for Health and Clinical Excellence is due to publish guidance on postnatal care which will include a section on jaundice recommending surveillance and investigation of any severe cases. |
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News.bbc.co.uk [Internet]. Call for new baby jaundice checks. 21 de Julio de 2006. [Fecha de consulta: 18 de Noviembre de 2014]. Disponible en: https://news.bbc.co.uk/2/hi/health/5203570.stm
Malvern baby Vasilli Kalisperas disabled after jaundice error
Vasilli Kalisperas had a fairly common enzyme deficiency called G6PD
A healthy baby has been left deaf, blind and locked inside his body because a trainee midwife did not recognise early signs of jaundice.
Vasilli Kalisperas from Malvern in Worcestershire had a condition called kernicterus, which is treatable with light therapy or a blood transfusion.
But the trainee who visited the family reassured his parents by telling them to place their son near a window.
Worcestershire Acute Hospitals NHS Trust has admitted liability.
Kernicterus is a condition caused by bilirubin, a yellowish substance found in bile.
Vasilli, who was born on 18 May last year, had a fairly common enzyme deficiency called G6PD which can speed up the process of kernicterus.
Cardiac arrest
When this is not removed from the blood it builds up in the body and can cross the brain barrier where it eventually causes brain damage.
His parents, Elena and Michael, said by the time their son was taken to hospital two days later, his bilirubin level, which causes the skin to turn yellow, was off the chart.
The National Institute for Health and Care Excellence (NICE) guidelines show bilirubin should be checked in all babies who have jaundice within 72 hours of birth.
Although the trust claimed it was normal practice for student midwives to visit patients on their own when they are in their final year of training, it said a new system meant no student midwife could make home visits alone unless their supervisor was confident they were fully competent.
The family were told by the hospital that in Vasilli's case there had also been issues with the trainee's previous placement.
His mother said that when he arrived at hospital on 20 May he was given phototherapy but went into cardiac arrest and had to be resuscitated.
She said: "When I saw him like that I just broke down.
"The amount of tubes that he had, I thought that he was not going to survive.
"I can't put it into words. I would not want anyone to go through that."
His father Michael said recent tests showed his son was completely deaf and may now have microcephaly, which means his brain will grow more slowly than his body, leaving him physically deformed.
"I see children who have passed milestones and it just upsets me so much to see that he has lost so much," he said.
'Deeply sorry'
Eddie Jones, from JMW Solicitors who specialise in Kernicterus cases, said children like Vasilli can make a full recovery if treated quickly.
The law company has dealt with several similar cases and believes they may be increasing because mothers and babies are being sent home earlier.
"There's not the degree of monitoring in hospital over a period of days that there was several years ago," he said.
"It is essential therefore that community midwives are vigilant."
The trust has admitted liability and said it was "deeply sorry for the mistakes made in Vasilli's care".
In the future, Vasilli's family will receive a multi-million payout that cannot be determined until the full extent of his disabilities are known.
Bbc.com [Internet]. Malvern baby Vasilli Kalisperas disabled after jaundice error. Michele Paudano. 21 de Mayo de 2013. [Fecha de consulta: 18 de noviembre de 2014]. Disponible en: https://www.bbc.com/news/uk-england-coventry-warwickshire-22603675
Kernicterus Is Observable, Predictable, Curable
Recently read your article on the rates of kernicterus and found it quite alarming. I am asking for an immediate apology and a retraction of this article.
This article is interesting since it states that only 25 out of 64,346 hyperbilirubinemia patients actually were truly kernicterus kids. That is a very low stat of 0.0003885 of all children diagnosed with hyperbilirubinemia. It is far less when you take into account all live births. Using DDS as a yardstick may be acceptable, but the surprising conclusion was that treatment made little difference.
To say “The time trend of incidence remained stable during the study years at 0.44 per 100,000 live births” means that nearly half of all babies born (44,000 out of every 100,000) have hyperbilirubinemia. If we use the 0.0003885 multiplier, then we can state that approximately 17 out of every 100,000 live births result in kernicterus. It would be interesting to plot those stats against other states, as well as other countries, to see if 0.0003885 times the total amount of kids with diagnosed hyperbilirubinemia represents a stable sum of actual kernicterus kids.
The clinician’s report seems to imply that kernicterus is an event that is statistically predictable, inevitable, and unavoidable; therefore, in spite of medical intervention, a predictable number of newborns will develop the disease. In a morbid sense, mortality rates are also predictable: “Data from a national database of death certificates revealed a similar stable trend in deaths attributed to kernicterus.”
The bottom line “kernicterus rates remained unchanged in the 1990s” conclusion and the bold citation that “there was not a ‘resurgence’ of kernicterus in the 1990s” are offered up in spite of the zero-tolerance policy of many hospitals that claim to know how to prevent the onset of kernicterus. The monitoring of infants, the early detection of hyperbilirubinemia, the effective and timely use of bili-lights, and possible blood transfusion should be adequate to quash kernicterus forever.
Perhaps newborn patients “with hyperbilirubinemia who are at extremely low risk for kernicterus are being overtreated,” but this does not preclude the need for those at high risk to obtain an early assessment and aggressive treatment. Perhaps the reason why there is no observable change in the incidence of kernicterus over the past 20 years is because the policy does not translate into procedures. Doctors seem to take on a lackadaisical, roll-of-the-dice type of approach to the prevention of kernicterus. Since the numbers are so low, they are not providing the vigilant watch and, therefore, allowing newborns to slip from hyperbilirubinemia to actual kernicterus.
The-hospitalist.org [Internet]. Kernicterus is observable, predictable, curable. Spencer L. Brown. 30 de Noviembre de 2011. [Fecha de consulta: 18 de Noviembre de 2014]. Disponible en: https://www.the-hospitalist.org/article/kernicterus-is-observable-predictable-curable/
Pagina de interes
En la siguiente URL, se encuentra una página de los Países Bajos, que es considerada como una fuente de información y proporciona apoyo para los padres del Reino Unido cuyos hijos se ven afectados por esta enfermedad y como una fuente de ayuda para otras personas que viven con esta condición.
https://www.kernicterus.org.uk/news/