Caring for a fragile baby

OI is a genetic condition present from birth. Its primary feature is fractures (a partial or complete break in a bone) which may be caused by minimal impact.

Always talk to your baby and warn them that you are going to move them. Use slow gentle movements and prepare ahead for where you are going to move them.

Gently slide one hand under their bottom and lower back. Place your other hand behind their trunk and head. Spread your fingers wide to give a larger area of support. This ensures the whole body is supported evenly.

Avoid lifting around their rib cage or body as this can cause discomfort and possibly fractures. Initially it is better to proceed with caution- when babies are older it is easier to know what they are comfortable with when being lifted.

If your baby is in discomfort, it may be easier to lift them on a flat non-slip pillow, pad, or a baby bath sponge support.

This will ensure the arms and legs are supported, which may be more comfortable when a limb is sore, fractured or a different shape. This is also a good way for nervous friends and relatives to cuddle a fragile baby for the first time.

Avoid pulling, twisting, or trying to straighten arms and legs.

Avoid catching fingers and toes in blankets or clothing when lifting.

Don’t hold or lift by their ankles or legs.

Instead, lift their bottom by sliding a hand underneath or roll them gently to the side.

It may be easier to slide a clean nappy under them before removing the dirty nappy, as this helps to avoid having to move them twice.

Choose clothes that are easy to put on. This will help to reduce the need to bend your baby’s arms and legs when dressing them. Clothing that is a size or two larger or opens wide is helpful.

When dressing them, slip your hand up the sleeve and gently bring their arm back down. This helps to avoid accidentally catching your baby’s arm in the garment.

Some fragile babies are quite warm and sweaty. They may need only minimal clothing or coverings. Try to use natural fabrics such as cotton for clothing and bedding.

• Get everything out that you will need before you start.
• Babies can be very slippery when soapy- it might be helpful to use a little less soap.
• You can use a bath support sponge to help support your baby’s body and limbs.
• Make sure to clean skin folds, such as the armpits and neck creases. Cotton buds can be helpful. Make sure the creases are dried thoroughly.

Try to keep their arms free from getting caught or twisted. You can use a nursing cushion for extra support.

Some babies may tire easily when feeding and as a result feed little and often.

• Lean right over before picking them up against your shoulder.
• Gently rub their back.
• If it is difficult to put them up to your shoulder, try gently rocking them up and down in a supported reclined position.
• Parents and carers- please ask your baby’s medical team for further advice if you have any problems.

The skull of a young baby can often be quite soft. If a baby spends too much time on their back, a flattened area can develop at the back of their head. To promote a good head shape, try to alternate the side your baby lies on, so that pressure is not always on the back of the head.

When lying on their back, babies learn to move their head, arms and legs. Use mirrors and small lightweight rattles to encourage play.

When your baby is physically ready, encourage them to lie on their side. You can use supportive pillows and rolled up towels to help support them. This is a safe position for play and using both their hands.

Choose soft, lightweight toys. Avoid heavy, hard toys that could drop or bang against their body.

Parents and carers- please speak with Physiotherapy or your Occupational Therapist for further advice regarding positioning.

Always use a car safety seat.

Your baby should not remain in their car seat for long periods of time. If you’re on a long journey, take frequent breaks so you can give your baby breaks from the car seat.

If your baby is small in size, use a car seat insert, available from the manufacturer. Check your baby’s head position and make sure their neck is not too flexed. Make sure that you can still access and fasten the straps as normal.

A lie-flat car seat may be more appropriate than a regular car seat. Please seek advice from an occupational therapist or physiotherapist if needed.

Fragile babies can get fractures, even when the best care is given.

Crying and swelling of a limb can indicate a fracture.

In young babies, the first sign of a fracture is usually that they stop moving a limb. They may not always cry.

Sometimes X-rays do not initially show a fracture, so if you are in any doubt, treat it as if a fracture has occurred.

Move the limb as little as possible and use over the counter pain relief, according to the dose and frequency advised on the box, or as advised by the doctor.

You can contact the OI team via our Service Coordinator on 020 7405 9200 ext 5293 or through MyGOSH.

If you have a medical question, please contact our OI Clinical Nurse Specialist (CNS) on 020 7405 9200 ext 5824.

The Brittle Bone Society offers support and advice to parents and carers of fragile babies. They have lots of fact sheets on their website.

You can call them on 01382 204 446 or visit their website at Brittle Bone Society website.