{"page":"\u003clink rel=\"stylesheet\" href=\"https://lessonplanet.com/assets/packs/css/resources-572d6a42.css\" /\u003e\n\u003clink rel=\"stylesheet\" href=\"https://lessonplanet.com/assets/packs/css/lp_boclips_stylesheets-f4d0de30.css\" media=\"all\" /\u003e\n\u003cdiv data-title='Caring for babies with brittle bone disease' data-url='/boclips/videos/5c54c3a9d8eafeecae162f46' data-video-url='/boclips/videos/5c54c3a9d8eafeecae162f46' id='bo_player_modal'\u003e\n\u003cdiv class='boclips-resource-page modal-dialog panel-container'\u003e\n\u003cdiv class='react-notifications-root'\u003e\u003c/div\u003e\n\u003cdiv class='rp-header'\u003e\n\u003cdiv class='rp-type'\u003e\n\u003ci aria-hidden='true' class='fai fa-regular fa-circle-play'\u003e\u003c/i\u003e\nVideo\n\u003c/div\u003e\n\u003ch1 class='rp-title' id='video-title'\u003e\nCaring for babies with brittle bone disease\n\u003c/h1\u003e\n\u003cdiv class='rp-actions'\u003e\n\u003cdiv class='mr-1'\u003e\n\u003ca class=\"btn btn-success\" data-posthog-event=\"Signup: LP Signup Activity\" data-posthog-location=\"body_link_boclips\" data-remote=\"true\" href=\"/subscription/new\"\u003e\u003cspan\u003e\u003cspan\u003eGet Free Access\u003c/span\u003e\u003cspan class=\"\"\u003e for 10 Days\u003c/span\u003e\u003cspan\u003e!\u003c/span\u003e\u003c/span\u003e\u003c/a\u003e\n\u003c/div\u003e\n\u003c/div\u003e\n\u003c/div\u003e\n\u003cdiv class='rp-body'\u003e\n\u003cdiv class='rp-info'\u003e\n\u003cdiv aria-label='Hide resource details' class='rp-hide-info' role='button' tabindex='0'\u003e\u0026times;\u003c/div\u003e\n\u003ci aria-label='Expand resource details' class='rp-expand-info fai fa-solid fa-up-right-and-down-left-from-center' role='button' tabindex='0'\u003e\u003c/i\u003e\n\u003ci aria-label='Compress resource details' class='rp-compress-info fai fa-solid fa-down-left-and-up-right-to-center' role='button' tabindex='0'\u003e\u003c/i\u003e\n\u003cdiv class='rp-rating'\u003e\n\u003cspan class='resource-pool'\u003e\n\u003cspan class='pool-label'\u003ePublisher:\u003c/span\u003e\n\u003cspan class='pool-name'\u003e\n\u003cspan class='text'\u003e\u003ca data-publisher-id=\"30356011\" href=\"/search?publisher_ids%5B%5D=30356011\"\u003eCurated Video\u003c/a\u003e\u003c/span\u003e\n\u003c/span\u003e\n\u003c/span\u003e\n\u003c/div\u003e\n\u003cdiv class='rp-description'\u003e\n\u003cspan class='short-description'\u003eDenver, US, May 24, 20131. Close of 9-month-old Megan Nichols lying on play mat2. Low mid shot tilt down from Leslie Nichols to with 9-month-old Megan3. Wide of baby Megan on play mat4. SOUNDBITE: (English), Leslie Nichols, mother of...\u003c/span\u003e\n\u003cspan class='full-description hide'\u003eDenver, US, May 24, 2013\u003cbr/\u003e1. Close of 9-month-old Megan Nichols lying on play mat\u003cbr/\u003e2. Low mid shot tilt down from Leslie Nichols to with 9-month-old Megan\u003cbr/\u003e3. Wide of baby Megan on play mat\u003cbr/\u003e4. SOUNDBITE: (English), Leslie Nichols, mother of child with osteogenesis imperfecta\u003cbr/\u003e````When we first heard osteogenesis imperfecta and we said, ``What? What is that?''\u003cbr/\u003e5. Close of baby Megan Nichols\u003cbr/\u003e6. Close of baby's leg  \u003cbr/\u003e7. SOUNDBITE: (English), Leslie Nichols, mother of 9-month-old Megan\u003cbr/\u003e\"It wasn't an option for us. I was 20 weeks. She was moving. She was, you know. She was mine. And I couldn't. We're actually so blessed to have every day with her because they told us that they didn't think that she would live very long.'' \u003cbr/\u003e8. Mid pan from Ryan Nichols with son, Pete, 3, to Leslie Nichols with baby Megan\u003cbr/\u003e9. SOUNDBITE: (English), Ryan Nichols, father of 9-month-old Megan:\u003cbr/\u003e\"I had been hopeful in some ways that, oh maybe it's not that bad. Maybe we'll be able to handle her and as long as she doesn't fall down, we're okay, or as long as we don't drop her somewhere. No, our light handling breaks her as well.''\u003cbr/\u003e10. Close of Megan having a bottle feed\u003cbr/\u003e11. Various of Ryan Nichols feeding Megan \u003cbr/\u003e12. SOUNDBITE: (English), Ryan Nichols, Megan's father\u003cbr/\u003e\"She'll get X-rays and she'll have a bunch of broken ribs, things that we didn't even necessarily know were there. She'll stop moving an arm or a leg when she breaks it and she'll stop moving it for about three days and then she works it back in and starts moving it again. Next thing you know she's going, she's going when it's a normal little break, ribs we don't even know.''\u003cbr/\u003e13. SOUNDBITE: (English), Leslie Nichols, Megan's mother \u003cbr/\u003e\"She's a week and a half out, I guess two weeks out of both arms being broken and she's playing with her toy and she's a tough little girl, I tell you.\"\u003cbr/\u003e14. Various close shots of Megan playing with rattle on her mother's lap\u003cbr/\u003e15. SOUNDBITE: (English), Leslie Nichols, Megan's mother \u003cbr/\u003e\"We think that I broke a few ribs trying to roll her back over. A nurse came out the next morning and checked on everything.''\u003cbr/\u003e16. Various close of Megan\u003cbr/\u003e17. Various of Leslie Nichols holding baby Megan walking to the nursery and changing Megan's nappy \u003cbr/\u003e18. SOUNDBITE: (English), Leslie Nichols, Megan's mother\u003cbr/\u003e\"We don't know, you know we could lose her next week. She could live to be 20. We just don't know.'' \u003cbr/\u003e19. Mid shot of Leslie and Ryan Nichols walking out the door with Megan\u003cbr/\u003e20 SOUNDBITE: (English), Leslie Nichols, Megan's mother     \u003cbr/\u003e\"We go places, we do things. She's going on a cross country trip. I want her to have these things. I want her to experience these things. It's too important. It's life. And you know what, this is life.''\u003cbr/\u003e21. Mid shot over the shoulder of Leslie Nichols placing Megan in the car \u003cbr/\u003e22. Close of baby Megan being strapped into the special bed used to transport her\u003cbr/\u003e23. Mid top shot of Leslie Nichols laying out clothes specially modified for Megan\u003cbr/\u003e24. Close low view of Megan being dressed\u003cbr/\u003e25. Wide of Dr. Ellen Roy Elias walking along corridor \u003cbr/\u003e26. SOUNDBITE: (English), Dr. Ellen Roy Elias, paediatric geneticist, Children's Hospital of Colorado\u003cbr/\u003e\"It still is not a disorder that we have a cure for at this moment. We have a treatment that can help improve and make some the symptoms more mild.''\u003cbr/\u003e27. Close of  Nichols moving Megan on play mat\u003cbr/\u003eLearning that your baby has been born with brittle bone disease can be shocking for parents, especially as there is no known cure for the disease.\u003cbr/\u003eIt's formally called osteogenesis imperfecta and it's caused by a defect in the gene which produces collagen. \u003cbr/\u003eShe isn't even able to walk, yet in her short nine months of life little Megan Nichols has suffered scores of broken bones.\u003cbr/\u003eHer parents Ryan and Leslie Nichols were astonished.\u003cbr/\u003eThey'd never heard of osteogenesis imperfecta.\u003cbr/\u003eMegan's mother says: \"When we first heard osteogenesis imperfecta, and we said, ``What? What is that?''\u003cbr/\u003eDoctors first discovered there was a possibility that Megan could have brittle bone disease before she was was born, but the Nichols were determined not to terminate the pregnancy.\u003cbr/\u003eLeslie Nichols says: \"It wasn't an option for us. I was 20 weeks. She was moving. She was, you know. She was mine. And I couldn't. We're actually so blessed to have every day with her because they told us that they didn't think that she would live very long.'' \u003cbr/\u003eThe Nichols had no idea just what having brittle bones meant, most importantly they discovered just how easily Megan's little bones could be fractured.\u003cbr/\u003eThe Nichols have to think carefully about things so many other parents take for granted.\u003cbr/\u003eJust holding baby Megan, or changing her nappy can be risky.\u003cbr/\u003eThe Nichols' three year old son Pete already warns visitors to the home not to touch her.\u003cbr/\u003eHis parents have explained that his sister has bones like fragile glass which crack and break.\u003cbr/\u003eRyan Nichols says: \"I had been hopeful in some ways that, oh maybe it's not that bad. Maybe we'll be able to handle her and as long as she doesn't fall down, we're okay, or as long as we don't drop her somewhere. No, our light handling breaks her as well.''\u003cbr/\u003eAccording to Ryan it's only clear that Megan has a fracture when she stops moving a particular limb.\u003cbr/\u003eHe says: \"She'll get x-rays and she'll have a bunch of broken ribs, things that we didn't even necessarily know were there. She'll stop moving an arm or a leg when she breaks it and she'll stop moving it for about three days and then she works it back in and starts moving it again. Next thing you know she's going, she's going when it's a normal little break, ribs we don't even know.''\u003cbr/\u003eLeslie Nichols explains: \"She's a week and a half out, I guess two weeks out of both arms being broken and she's playing with her toy and, she's a tough little girl, I tell you.\"\u003cbr/\u003eA child's first steps, crawling and walking are moments treasured by most parents, but the Nichols can't take pleasure from these simple things.\u003cbr/\u003eNow Megan can roll over her mother is especially concerned.\u003cbr/\u003eLeslie Nichols says: \"We think that I broke a few ribs trying to roll her back over. A nurse came out the next morning and checked on everything.''\u003cbr/\u003eThe Nichols have no idea what Megan's life expectancy will be.\u003cbr/\u003eThere are various types of osteogenesis imperfecta.\u003cbr/\u003eWith type1  the most common and mild form people can live a normal lifespan, but with other more severe types, doctors say a child could die in the first year of life, or if they survive they are likely to develop physical deformities and they may be confined to a wheelchair.\u003cbr/\u003eLeslie Nichols says of Megan: \"We could lose her next week. She could live to be 20. We just don't know.'' \u003cbr/\u003eThe Nichols are determined to make sure that Megan has as normal a life as possible.\u003cbr/\u003eLeslie Nichols says: \"We go places, we do things. She's going on a cross country trip. She, I want her to have these things. I want her to experience these things. It's too important. It's life. And you know what, this is life.''\u003cbr/\u003eWhen the Nichols go on any journey Megan is placed in a specially designed bed to ensure she doesn't experience any jolts from uneven road surfaces, all her clothes have been adapted with press studs so that her limbs aren't bent when she's being dressed.\u003cbr/\u003eDr. Ellen Roy Elias is a paediatric geneticist at the Children's hospital of Colorado.\u003cbr/\u003eShe says: \"It still is not a disorder that we have a cure for at this moment. We have a treatment that can help improve and make some the symptoms more mild.''\u003cbr/\u003eThe Nichols are trying to live for the present, cherishing each moment they have with their daughter.\u003cbr/\u003e\u003c/span\u003e\n\u003c/div\u003e\n\u003cdiv class='action-container flex justify-between'\u003e\n\u003cbutton aria-expanded='false' aria-label='Read more description' class='rp-full-description' type='button'\u003e\n\u003ci class='fai fa-solid fa-align-left'\u003e\u003c/i\u003e\n\u003cspan id='read_more'\u003eRead More\u003c/span\u003e\n\u003c/button\u003e\n\u003cdiv class='rp-report'\u003e\n\u003c/div\u003e\n\u003c/div\u003e\n\u003cdiv aria-labelledby='resource-details-heading' class='rp-info-section'\u003e\n\u003ch2 class='title' id='resource-details-heading'\u003eResource Details\u003c/h2\u003e\n\u003cdiv class='rp-resource-details clearfix'\u003e\n\u003cdiv class='detail'\u003e\n\u003cdl\u003e\n\u003cdt\u003eCurator Rating\u003c/dt\u003e\n\u003cdd\u003e\u003cspan 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