Weighted Blanket for CHARGE syndrome

CHARGE syndrome is a rare disorder that affects multiple areas of the body. In fact, the name is an abbreviation for the health issues commonly associated with this condition: Coloboma, Heart, Atresia of the Choanae (also known as choanal atresia), Retardation of Growth and Development, Genital and Urinary Anomalies, and Ear Anomalies.

A Closer Look At The Symptoms:

1. Coloboma of the eye – this is a problem wherein part of the eye is underdeveloped while in vitro, and it looks similar to a keyhole 

2. Heart defects – ventricular septal defects and tetralogy of Fallot are some heart conditions that may be caused by CHARGE, although symptoms may vary in severity

3. Atresia of the choanae – refers to a condition wherein a blockage comprised of bone or tissue is restricting the passageway in one or both openings at the back of the nasal cavity

4. Retardation of growth and/or development – there might be obvious physical and mental underdevelopment in kids with CHARGE when compared to their same-age counterparts. Hormone treatments are even necessary for them to begin puberty

5. Genital and/or urinary abnormalities – hypogonadotropic hypogonadism (i.e. underdevelopment of external genitalia leading to small penises and testicles) is common in males with CHARGE, while in females it may be less pronounced

6. Ear abnormalities and deafness – a majority of kids suffering from CHARGE syndrome experience some degree of hearing impairmentas well as noticebly underdeveloped or unusually-shaped ears

This disorder occurs in approximately 1 in 8,500 to 10,000 newborns and affects less than 200,000 people in the U.S.

This syndrome is extremely complex and the medical difficulties vary greatly from person to person. Affected children are born with life-threatening birth defects and have to spend months under observation in the hospital as newborns.

What Causes CHARGE Syndrome?

A gene mutation is the cause of CHARGE syndrome, particularly the CHD7 gene. Almost half of kids with CHARGE have this type of mutation. Even though this condition is genetic, it's not passed on from parent to child. The mutatation occurs purely by chance.

Minor Symptoms Of CHARGE Syndrome

Some symptoms of this disorder are not exclusive to CHARGE sufferers; these symptoms are also observed in other people without this condition. They are:

  • delayed motor skills development (e.g. walking and sitting up without support)
  • cleft lip and/or cleft palate
  •  square-shaped face
  • facial asymmetry
  • kidney failure tendencies
  • weak immune system
  • abnormal curvature of the spine (scoliosis or kyphosis)
  • extra or missing fingers and toes
  • club foot

Treatment For CHARGE Syndrome

Correcting the choanal atresia and heart defect are the priority issues for this condition. An operation that last for around 1 hour is enought to fix the choanal atresia, by making a hole through the bone or tissue that's blocking the nose. 

Heart defects will also require corrective surgery under general anaesthetic, as well as children with facial deformities like cleft lip or palate.

But for the safe, non-invasive treatment of CHARGE syndrome, there is always the Miran weighted blanket.

It makes use of Deep Pressure Therapy (DPT) which is the concept of "grounding" someone using heavy weight, for example, squishing a person between two bean bag chairs. With Miran weighted blankets, the weight is provided for by glass microbeads inside 6" square pockets that make up the entirety of the blanket.

The action of "grounding" helps to improve the psychomotor ability of someone with CHARGE. Proper sensory integration (i.e., motor, sensory input) is the root of child development. Miran weighted blankets allows muscles to relax, making them more responsive to the pulses delivered by the brain.