Letter of Medical Necessity

Parent’s Name

September 24, 2012

RE:              A***** P*****
            Insurance Company & ID number

To Whom It May Concern:

My son/daughter, *****, is medically complex.  His/her current diagnosis include:
List ALL diagnosis (ours is about 17)
Chronic cuteness

He uses: (List all equipment)
LTV 1150 ventilator, dependent 24/7
High-flow oxygen concentrator
Devilbliss suction machine
Pulse oximeter
EnteraLite Infinity feeding pump
BAHA hearing aid
EaSys Exomotion wheelchair

(Describe your child and their abilities.  Try to address all body systems, including emotional and social as well as physical.)
Currently, ***** is ** months and sitting with support, and for up to a few minutes without support.  He has started rolling over, but only when he is in a completely flat position.  Due to the need to raise the head of his bed, he does not have the opportunity as often to practice this.  In fact, over the past two months, he is rolling over less and less because he does not often get “practice time.” 

He purposefully uses his hands to bring objects to his mouth, hit at his toys, and turn on his music with an adaptive button.  He also scoots around by rocking his body back and forth.  He participates in physical therapy, occupational therapy, developmental therapy, and hearing therapy.  Developmentally, he is at about a six to nine month level.   He will continue to reach milestones until about an 18 to 24 months developmental stage.  He is not expected to develop intellectually or physically beyond there.

On the average, children with Trisomy 18 sit with support at 20 months (18 months for A****) and on their own at 38.5 months (26 months for A****).  They first roll over at 30.5 months (24 months for A).  In the future, we expect A**** to reach other milestones such as crawling and cruising furniture.  On the average, children with Trisomy 18 do this at 52.7 and 72 months respectively.[i]  Based on current growth charts and his percentiles, we expect A**** to reach a standing height of 37 to 48 inches at full growth.[ii]

A**** currently uses a drop-side crib to sleep in, on the highest level, so he can be reached for care-giving.  Because he needs his head elevated, we have placed a couch cushion under the head of his mattress to elevate his head about 20 degrees.  We also use a smaller pillow under his knees to help keep him in an upright position when sleeping.  When sleeping, he will often move this smaller pillow over to the side, freeing his body to slide down a level position, without his head raised. 

A****’s rigid trach was changed for a flex-end trach mid-July 2012 because of trauma to his trach stoma.  Because he is moving and rolling so much more, the combination of the ventilator circuit and the rigid trach was causing frequent tearing to the stoma.  The flex-end trach allows for more movement with less stress to his stoma.  However, when A**** sleeps, water from his circuit gathers in the outer cannula of his trach.  When he moves, it then dumps down his trachea and into his lungs, causing fluid in the lungs and oxygen desaturations into the 70’s.  It takes suctioning, high levels of oxygen (7-10 liters/minute) and up to an hour to recover when this occurs.  He will also have increased secretions, plugs and oxygen requirements over the next few days.  When he is awake, he moves frequently enough that there is no accumulation of water. 

(Detail challenges and hospitalizations from the past that can be minimized by having the new bed.)
A**** has had 21 inpatient admissions since his initial discharge from the NICU at two weeks of age.  Sixteen have been for respiratory issues, with the other five being surgery or inpatient studies.  Of those 16, six required stays in the PICU to restore his health. 

(Explain what is needed in a bed, probably don’t want to specifically address which bed.)
A**** needs a safe place to sleep and play.  His head and knees need to be elevated when he sleeps to prevent water in his lungs, causing more pneumonias.  He needs a flat enclosed surface to play when awake.  He cannot simply be placed on the floor, because he travels and his ventilator does not.  If he is on the floor, he must have someone by his side at all times.  We have a very busy household.  A**** is the youngest of nine children and it is simply not feasible to have someone with him every moment. 

Also, his physical limitations cause him to be in his bed most of the time.  It is important for him to have as unobstructed view as possible from his bed.  Because he has significant hearing loss, visual stimulation is that much more important.  He needs to be able to see clearly the environment around him.  A clear plexi-glass window will provide the least restrictive barrier to his vision. 

The double-sided feature is also necessary for A****.  One several occasions, paramedics have been called to assist A****.  They move his bed into the middle of the room and work from both sides.  When he was life-flighted at five months old, having the ability to have more than one person at his side saved his life. 

Prior to his new trach, A**** slept on a flat surface.  We have now resorted to elevating the head of the mattress with a couch cushion.  However, this does not allow him to lie flat when awake and playing, and we are already seeing a decrease in his efforts to roll over.  Not only is this an important skill for him to develop, it also increases the health of his lungs as he moves around and repositions himself. 

(Describe where the set up will be and if it can support the bed and electrical requirements.)
His room is 11.5 x 12.5 feet and has several grounded outlets.  This includes two not currently in use on the side of the room where his bed is and three on the other side of the room. 


My Name
Good Contact Phone Number

(Footnote any supporting documentation for claims you made.) 
[i] Carey, John C., MD, and Ann M. Barnes, RN. Care of the Infant and Child with Trisomy 18 or               Trisomy 13. 3rd ed.  Omaha, NE: Munroe-Meyer Institute for Genetics and             Rehabilitation, 2008. Print.

[ii] http://www.trisomy.org/wp-content/uploads/2012/02/T18-height.pdf


  1. Well written! Your story is an encouragement to us. Our daughter will be 1 year old tomorrow, with full Trisomy 18. She has surpassed so many doctors' expectations, and we expect her to continue!! Keep up the good work!

    1. I am so excited for you! Happy Birthday, little one!! Do you have a support group you're part of? I assume your doctors are supportive. This is such a wonderful milestone, and wishing you many, many more.