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Helpful tips for newborns |
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| The following is a collection of things we have learned along the way that may be helpful to others caring for an infant with OI. However, since OI affects each individual so differently some of the things we have done may or may not be applicable for another child with OI. |
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| When Abigail was first born, reading and learning about OI was very overwhelming. All I could do then was think about everything I could NOT do with Abigail. It takes a little time to get to know your baby and what she will or will not tolerate, and, at least for us, this constantly seems to be changing. We could not pick her up under her arms for 2 months and her legs were so badly broken that we made little sleeping bag outfits so that there was as little interference as possible. There is no way to tell what your baby physically will or will not be able to do. Just take things one day at a time and celebrate each and every little milestone. While this 'not knowing' is frustrating, it also leaves a lot of room for HOPE! One day it hit me that there were so many things that I could do with her and that there were things she was doing her self. Best of all there are SO MANY things that Abigail will be able to do in the future - paint, play a musical instrument, read, write, enjoy computers, swim, golf, go to school, have a job! The list is endless! |
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| Bathing Abigail was a little difficult at first. I bought a bathing sling - I got mine at Baby and Company and have seen them at other places. It is a mesh cloth stretched across a downward sloping metal frame. They are meant for bathing tiny newborns. I could fill the tub with enough water to bathe her and both my hands were free. The most important thing is to make sure that you have all your bathing items set up before they bath so that you may keep you eye on them at all times. Be careful of handling legs with a towel making sure that they are not hindered. The bathing sling is about R40. |
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Handling your baby with OI |
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| Common sense is the best guide when handling your baby with OI. Remember that the bones are very fragile and can break with little or no pressure. Be especially careful of the long bones in the body - the arms, legs, and ribs. You should not lift your baby under the armpits or pull on his/her arms or legs. When you change diapers, lift the baby by the buttocks and not by the ankles, as is customarily done. Spread your fingers apart as far as possible, and put your hand under the buttocks, with your forearm under the baby's legs to prevent them from dangling. To lift the baby onto your shoulder, or carry the baby, use the same technique, but with one hand behind the head and the other behind the buttocks, again with fingers spread as far as possible. When lifting or moving your child, be careful that little fingers and toes do not get caught on clothing you are wearing, such as shirts or blouses that button down the front. We found it helpful to place a piece of egg crate foam rubber on top of a pillow and then insert them both into a pillowcase and use this to transport the baby. This type of support can also be used as a base when holding the baby. A good purchase would be to buy a sheep skin to put under the sheet whilst sleeping. This prevents bedsores and absorbs any odours. This comes handy when in traction because of the lack of movement. |
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Papoose Bouncy Seat Umbrella stroller Pram |
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| Our Occupational therapist advised us not to use a bouncy seat; she said the seat is not very supportive and bad for her spine. We were advised not to use a papoose as it did not allow for the correct posture for the pelvis and legs. The same goes for flimsy umbrella strollers--they are not supportive and do not promote good sitting posture. I recommend you invest in a good pram/stroller as you will find your baby will spend quite a bit of time in the pram/stroller. Try and invest in a pram that can hold a car seat as this makes it easier to move them about when they are small without interfering with their legs and arms. Do not leave them in the car seat for long periods of time as it is a curved shape and does not promote good posture when over used. We found Abigail gets rather warm and therefore we made sure the fabric's in the pram were cool and allowed for breathing. We purchased a Gracco pram which cost R4500,00 (including car seat) but this has been a very good investment. |
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| The only bad thing with a mobile was that it encouraged her to lay flat on the back of her head. I suggest buying a mobile that sits on one side of the crib and a little baby mirror tied to the other side of the crib. The best thing is it got her to turn her head to the right or left rather than just lying flat. This has also encouraged her to turn onto her side, which aids the strengthening of the obliques muscles. |
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| When we first found out about Pamidronate we thought it was only offered in America. Then we learned it was also offered at Parklands Hospital and Nkosi Albert Latuli hospitals in Durban. Pamidronate has made such a wonderful difference in her life! She is is truly a different baby since starting the treatment. If your baby has moderate to severe OI, I would do everything in my power to get this treatment--whether it is working with your insurance to get it covered at a local hospital, or working with the Nkosi Albert Latuli hospital, or flying somewhere where it is available--I would not waste any time doing so. We believe that the earlier a baby can get on it the better!! It has given us so much hope for Abigail. |
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| Abigail has an Occupational Therapist, who she visits twice a week. She is WONDERFUL and has helped us so much. We set goals for her, long and short term. She gives me great information and suggestions on how I can help Abigail's progress physically. If you don't already have a PT and OT speak to your Doctor for advice on somebody suitable. It has been such help to us! |
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Abigail perspires quite a bit which means we bath her twice a day and with the fact that she is so small and fragile it was difficult at first to find clothes to fit that were easy to put on. With them being so fragile it is difficult to get in between the creases of the skin. I have listed a number of products that really helped keep her skin clean. I suggest you try the following places and products
| BioStrath | Multivitamen containes total natural product with all required vitamens and minerals (excellent for OI Children) | | Woolworths | Small (newborn) vests with large opening for necks. | | Stretchy socks as you will not be able to use booties that tie around the ankle. | | Bibs with poppers around the neck, easy to undo. | | Ackerman's | Babygrows with poppers from top to bottom allowing for easy movement when dressing. | | Edgar's | For premature clothes if your baby is small (Abigail wore prem from birth to six months). | | Baby & Company | Premature dummies/pacifiers (Pigeon). Small mouths need small dummies/pacifiers. | | Reggies | Soft toys - try and get soft toys so that there is no chance of banging against the body. You can even buy soft dolls where the whole body is material and the face is of soft latex. | | Nappies | Disposable Nappies are easier to use and allows for less contact with the legs. Buy a good quality nappy and ensure you check at all times where the "stickers" are as you don't want them to stick to the body. | | Elizabeth Ann's | Cornstarch Powder (Goes on easily and gets into all the creases and dry's up excess water). | | Bennett's | Baby bum cream (Abigail has had no nappy rashes for eight months). | | Stopayne | Be careful of anything with Codeine in it as OI babies have a tendency to get constipated. Stopayne really helps when there is a sore fracture. | | Laxette | is a natural remedy for constipation which is not addictive but just softens the stool. | | Ponstan | This is an anti-inflammatory, which is good to use when a fracture occurs. | Bennetts Colic
remedy | OI babies are difficult to wind. This was a lifesaver. |
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