When sleeping with NKH there are a few different aspects that might need consideration. Some children have night feeds, or might need to be on an incline to help with reflux. Parents with older children might benefit from a sleep-safe bed, which allows the bed to be raised, with drop down side rails. Some of the more attenuated children might need enclosed spaces to keep them safe.
There are several different options available.
While they’re still small, most children are able to manage in cribs or bassinets. However, you may find that you need to elevate one end to help with reflux, or night time tube feeds.
To achieve this you can:
Use Pillows, towels or a wedge
Place a small pillow or folded towel under the mattress at both the head and foot of the crib/bassinet. That way the child’s head is elevated but the child won’t slide down.
Use a newborn lounger, with a wedge
Some newborn loungers are ideal (like the boppy lounger) with a wedge pillow underneath. Convenient if you already have a newborn lounger handy.
Use a crib with an elevated board
Typically cribs have slats, but you can purchase an inexpensive thin section of MDF board from your local hardware store to lay between the slats and the mattress. You can then place books at one end to elevate the mattress. The benefit of this solution is apnea monitors (like the angelcare system) only work on solid surfaces (and not slats) so this is an ideal solution in that case.
One end elevation built in
Some infant beds (like the Chicco Next2Me Dream Side Sleeping Crib) allow you to incline one end, helpful for reflux.
When a child with NKH outgrows their crib (usually around ages 3-5), some parents prefer DIY alternatives to the expensive Sleep Safe Beds (or would rather not fight their local authority/insurance companies).
There are many options:
Build a frame with pool noodles
If you, or a friend have the skill, you can build a crib/like frame from a twin bed, and cover the spindles with pool noodles. You’d be able to design for your needs (building it at an appropriate height, with a side that folds down for cares, or locks when upright). It can be a very effective way of meeting night needs.
Regular bed with pool noodles
Not all children are wriggly and need safety confinement. You can place pool noodles under the fitted sheet to provide a ‘bumper’ to prevent a child from falling out. This is especially useful if your crib converts to a toddler bed.
Tent with a twin size mattress
Some, more attenuated children require a different set up – something to keep them safe and from wandering during the night with easy access. A tent with a twin size mattress in is an easy, effective solution. Either on the bed, or on the floor. If you’re worried about falling off the mattress, you can add pool noodles under the fitted sheet.
Floor mattress with babysafe gates/diy railing system.
Tents may not be suitable for everyone. It’s possible instead to build or use a baby gate/railing system (like the Surpcos Bed Rails for Toddlers) around the bed or a mattress on the floor to give your child a safe place to sleep.
These are beds that are similar to hospital beds for a home environment. Typically they will allow height adjustment, either end can be tilted, and has walls/rails to keep your child safe.
There are 3 main types of medical beds: manual, semi-electric and full electric.
Manual: Hand cranks are used to raise and lower the head and the foot of the bed as well as to adjust the height of the bed. These beds are the most economical and a good choice for people that do not require frequent repositioning. Hand cranks are typically found at the foot of the bed and require a person that is physically capable to operate.
Semi-electric: An electric motor is used to raise and lower the head and foot portions of the bed. Patients and caregivers adjust the positioning by pressing buttons on a hand pendant. The height of the bed is adjusted manually with a hand crank and will require someone that is physically able use it. Semi-electric beds are ideal for people that do not require the height of the bed to be adjusted often but will benefit from touch of a button positioning.
Full Electric: Height and positioning of the bed is controlled by the patient and/or caregiver with a hand pendant and does not require the use of a hand crank (unless there is a power outage, but many beds now have a back-up battery that would power the bed in emergency situations).
Pedicraft Canopy Beds
www.pedicraft.com
Pedicraft offers an enclosed crib bed with a completely padded interior. There are four mesh panels that unzip on all sides (with locking zippers that can be positioned for tubes/wires), and padded bed rails.
It’s manual (height adjustable – up to 10 inches – with a hand crank), comes on wheels and has the options of head/knee elevation (or a wedge, if you’d prefer) and an under bed storage attachment.
Ida
Hannah
KayserBetten Beds
www.kayserbettenus.com
KayserBetten offers several bed options, their Hannah and Ida options offer different solutions, depending on what you’re looking for. Both come with manual/electric options.
The Ida is ideal for non-ambulatory children. It’s height adjustable, on casters and comes standard with a manual Manual Lift and Latch Sleep Platform (so the legs/head can be elevated). The side panels can be padded, spindles or plexiglass.
The Hannah is a tall rail bed and extremely stable. It’s low, to allow children to climb in/out, with tall safety rails (either padded, or with plexiglass).
Kinderkey
www.kinderkey.co.uk
Kinderkey offer a whole range of beds, and are one of the more popular suppliers in the UK. If you’ve ever stayed over in a respite facility, it’s likely you’ll have seen one of their beds. The options:
The Cosysafe Cot
Is a safe and comfortable, electronically operated, height adjustable, profiling, nursing cot/bed suitable for adults and children. There are four, outward opening panel doors (available on one or both sides) with rails or perspex panels.
The Bearsnoozzze
Another safe and comfortable, electronically operated, height adjustable, profiling, nursing cot/bed suitable for adults and children. The bed allows tilting (as it has a four part profiling mattress frame with adjustable inclination for therapeutic support), has casters, and allows clear vinyl or mesh windows in the sides, if you don’t fancy the split padded sides. It also allows for extra low height adjustment, to make it easier to observe from above.
The Koala Cot
Kinderkey’s shortest cot/bed. The safety sides come in a variety of heights, the bed is height adjustable, and has four swivel and locking castors. The cot/bed breaks down into two pieces for easy transportation/installation. It has outward-opening panel doors on one or both sides (available in wooden rails or perspect panels) and come with easy open childproof locks. It’s ideal for long term care, as it can easily convert back into a standard height adjustable bed.
The Junior Care Bed
For children from 3 to 12 years. It’s an electrical cot with lightweight metal bars. It’s height adjustable, the head and knees elevate with casters, and optional IV supports. You can also get wrap around bumpers for the rails.
The Dali Electric Nursing Bed
A 4-section, profiling, variable height bed. Four casters, with head and knee elevation. Side rails available in wood, metal or padded, and optional IV rails.
The Bearhugzzz Bed
It’s a soft, yet sturdy and safe sleeping environment – the main benefit is it’s ability withstand vigorous behaviour, while preventing injury thanks to it’s soft padded sides. The steel walls are covered by soft foam with a waterproof, wipe-clean, antimicrobial fabric that is available in a range of patterns and colours. It’s height adjustable, comes with optional viewing panels (clear vinyl or mesh).
The CosySafe Plus
A fully electric 4 part profiling cot/bed. It’s height adjustable with outward opening doors and sides are made from Ash wood. The sides can be covered in perspex, wooden rails, panels or padding.
Savi Care Beds
www.save.de
Savi provide a range of beds, of various heights and configurations. The majority are electronically height adjustable, allow head elevation, comes with casters, and have a mix of side options (perspex, rails, padding etc). They also promote an ‘extensive range of accessories’ so that’s fun.
Bakare Beds
www.bakare.co.uk
The majority of Bakare beds are electronically height adjustable, allow head elevation, comes with casters. While they offer a few different styles of children specific beds (similar to Savi), their speciality is the Klearside Low, essentially an alternative to a full length side rail bed with see through sides (available in vinyl, perforated vinyl or mesh).
They also offer the Evolution 400, while technically an adult twin, it has the same features without looking like a chunky children’s bed. As well as the standard offerings, this bed has a mix of side options (perspex, rails, padding etc). You can pick the wood colour, the head rest types, rail types (split rails or full or quarter length), and you have the option of a range of accessories (floor lights, IV rails etc)
Sleep Safe Beds
www.sleepsafebed.com
Sleep Safe are perhaps one of the more well known special needs beds providers, particularly in the US. They offer a range of customisable beds – varying heights, finishes and sides. You can get height adjustable frames (manually, via crank) that also allow head and knee elevation, as well as a range of side cuts and padding.
Tempur-pedic Ergo System
www.tempurpedic.com
While not specifically a children’s special needs bed, it is a luxury option that has an electronic base which provides head and knee elevation.
If your child spends the majority of their time in one location/position – they’re at risk of bed sores (also known as pressure ulcers and decubitus ulcers). They’re essentially injuries to skin and underlying tissue resulting from prolonged pressure on the skin.
Typically Bedsores develop on skin that covers bony areas of the body, such as the heels, ankles, hips and tailbone.
To prevent bedsores, ideally you’d like to reposition your child at least once every two hours (ideally more often) to ensure weight is distributed across different areas of the body. There are also several different mattresses/toppers that can help.
Additional Cushioning
There are many additional options. If it’s a mild case, you can use extra blankets or duvets in the bed, or additional cushions/pads mats for play areas/seats.
You may find gel mattress overlays ideal – they provide a barrier between the child and the bed, and distribute weight more evenly to relieve pressure. They have a non-shear, low-friction surface (meeting the common cause of pressure wounds).
Side note:
Heat increases the risk of developing pressure sores, and so standard foam mattresses and cushions and bead-filled mattresses should be avoided by those who get too hot, as they retain heat and do not allow the to air circulate.
Modular Memory Foam Overlay
Inflatable Overlay
Just like a lilo, or a blow up bed, but a mattress overlay. It’s designed to redistribute the pressure to prevent pressure ulcer development. It does need some taking care of though, to ensure that it stays inflated. If it deflates, it can ‘bottom out’ – where it’s not inflated enough to hold the weight of the person on it, and they can develop a pressure sore at the point where their weight hits the under the mattress.
Examples:
Alternating Pressure Relief Mattress System
This is a mattress system which pumps air (or water) through the mattress, periodically changing the pressure points under your child.
Examples:
There are multiple ways to get a bed funded. In the UK, if your child needs one, one will be provided by your local OT/Social Services team on the NHS. If you’d prefer not to wait for a referral, you can self fund one (or get a grant) if you have a medical professional willing to write a needs letter.
In the states, some beds are covered by insurance/medicaid, but it varies from state to state and insurer to insurer. Some will provide fully electronic beds, some will only provide manual beds.
It’s a very personal choice that varies from family to family. Some prefer having their kiddos in with them in their rooms/beds, some children sleep in their own rooms with monitors, some kids have night nurses that work waking shifts to watch over them, with set ups in multiple rooms to manage the nights with respite and the nights without.
It’s a very personal choice, and there is no wrong answer. As long as you feel your child is safe, whatever works for you goes.
