This page is designed to outline what Bipap equipment (and how) we used with Bethan and is for information not a guide for others as each child is so different. Whilst Bipap (Non Invasive Ventilation - N.I.V) worked wonders for Bethan - it is not suitable in all circumstances.

It is clear that in the U.K, Bipap for SMA1 children is rarely offered (taken up) if the condition is diagnosed at a Local level in the community - only 1 in 10 cases, but the use is much higher if the child has come through an ICU path. Bethan was first given a Bipap machine in ICU at 5 months of age following virtual respiratory failure due to infection. CPAP had at first been tried and had not helped (it does not assist exhalation) as SMA 1 children have difficulty breathing both in and out. The machine we were given was a RESMED VPAP III and was supplied with a humidifier unit.

This machine is very small about the size of a shoebox and weighed just a few pounds - and without the humidifier attached very portable. It was (with just a little training) simple to operate and adjust as required.

The machine came with Bethans first mask which was a RESMED Sullivan Infant Bubble Mask with a small infant headgear. This mask works really well with Children from about 3-6 months or so, as it has a very small aperture for the nose and is just a thin membrane bubble which almost floats on the skin with just a very light fit to make a seal. The biggest problem we had initially was staff and carers not used to this mask tightening the headgear far too much and pinching her skin. With just a very light loose fit it proved effective and comfortable.

Resmed Sullivan Infant Bubble Mask

 

Bethan first used this mask from around 5 months of age but we were not able to get any larger bubble cushions - having searched some Australian suppliers - a small child version also seems to be available but we did not ever get hold of this one. This link shows other cushions but as always - finding child sizes and headgear is the difficulty.

http://www.talkaboutsleep.com/third_tier/equipmentfair_resmed_modularmask.htm

 

As she grew we had to carefully trim the insert (nasal aperture) from about 7 months to 9 months. This was far from ideal as they mask quickly looses form, does not allow for much trimming and it was easy to compromise the fit. In the picture above you can just see her nostrils inside the aperture but as she grew so we had to trim the insert. 

It was a shame we could not find bigger inserts as this mask was very comfortable and lightweight and placed almost no pressure on her face.

 From here it seemed we bought or tried endless masks to get a replacement mask as she grew out of this first mask.  Most were adult masks in Petite sizes - however whilst sometimes the nasal aperture would be small enough - the rest of the mask unit would swamp her face being too large and heavy and the headgear would be for adults.

Some of those that nearly worked were the left Respironics Simplicity (nasal tip mask - adults) and the right Sleepnet MiniMe(adult petite)

 

Both of these masks were small and fitted well around her nose however.... The Respironics mask was difficult to attach, even with our own child head gear, to get a useful seal - and it is not vented.

The MiniMe only had two anchor points for any headgear and as such was very difficult to gently but adeqautely secure it in place. We jerry rigged with some of the small headgears we had, but it always had a tendancy to spring away from her face and break any seal.  

 

In the end almost by accident we stumbled upon a suitable CHILD mask for children of about a year or more than 7kgs. Though easily obtainable from Respironics it never seems to be advertised or appear anywhere obvious on the net. Respironics have kindly just added this mask to their web shop. http://www.respironicsonline.co.uk/PublishedService?pageID=9&itemcode=1008829

****** GREAT NEWS USA PARENTS ********

It looks like this mask is now available in USA as FDA approval has been given. Respironics USA are now rollling out this mask though at present (August 2010) and at this trail stage there is a very limited supply. Get in touch with the Customer Care Dept  1-800-345-6443

Respironics Small Child Profile Lite Nasal Mask and Blue mesh Softcap.

 

 Bethan at nearly 2 years of age. She wore this mask from around 11 months until 2 years 2 months.

As mentioned before, finding the right mask is also linked to finding the right headgear to work with a small infant and an infant who's head was always on one side or the other. Resmed do a Kidsta MaskTM (aimed at 7 years plus) but for Bethan apart from being too large generally the headgear was far too cumbersome and would have caused discomfort.

 

 

Whilst this type of headgear was far too cumbersome for Bethan but is no doubt excellent for older children.

The third mask Bethan used regularly during the day from about 18-20 months of age - especially for watching TV was the Respironics Comfort Lite 2 (Adult) with a Adult Petite Nasal Pillow. 

 
 

This mask gave Bethan a great field of view and was quite light over her nose so was great for watching TV and daytime play. The headgear however was still adult size and any slight movements of the headgear or hose etc would mean the nasal cushion would move off her nose. In Bethan's case (being almost completely paralysed) this was not a real problem but it did mean this mask was not any practical use for sleep or travel.

Just by way of example the following photos show the difference between the Blue Gel Respironics Profile Light in Adult (even in petitie) and the Respironics Small Child Version.