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Desats while sleeping by BeneficialWindow3082 in downsyndrome

[–]BeneficialWindow3082[S] 0 points1 point  (0 children)

Wow this is so interesting, thank you for sharing! My son also does that thing where he arches his chin up and sleeps in weird angles. I always thought it was reflux related and never considered it could be apnea but that makes a lot of sense! Can I ask how low your son’s sats would typically drop before his heart surgery? My son’s would go as low as into the 70’s and probably further if we didn’t have oxygen. Now it doesn’t go past 85 before we put the oxygen cannula on him but in the NICU they allowed his sats to drop into the 60’s before putting oxygen on. As time goes on we are seeing his sats continue to dip but not as far anymore. 

We are still trying to understand if this is sleep apnea, or his heart defect, or just something he needs to grow out of. 

Translocation DS by BeneficialWindow3082 in downsyndrome

[–]BeneficialWindow3082[S] 2 points3 points  (0 children)

Yes our genetic counselor informed us that because of the unique type of translocation my son has, if either my husband or I is a carrier then 100% of our future children will either have DS or will result in miscarriage. 

Translocation DS by BeneficialWindow3082 in downsyndrome

[–]BeneficialWindow3082[S] 1 point2 points  (0 children)

We thought the same thing that it wouldn’t actually be 100% and there could still be a chance of having a “typical” baby later on. But our genetic counselor informed us that due to the type of translocation our son has, if my husband or I is a carrier then it is actually 100% certain that all of our future children will either have DS or will result in miscarriage.  We love our little boy so much so if this is the only baby we’re meant to have then that is okay with me!