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Old 05-06-2013, 08:21 AM   #1
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Downs Syndrome

My best friend gave birth last week to a beautiful baby boy. I was able to attend the birth and was there for quite a while after. Baby had a very rough entrance and took a bit to get him breathing. After that a whilwind of nurses and doctors were in and out of the room. Everyone smiled but I knew something was wrong. After the pediatrician looked him ovee everyone except Mom and Dad were asked to leave the room. They were told most likely their son had Down Syndrome. Baby has wonderful parents and they love him perfectly. Since then they found out he has a small hole in his heart, an he has failes the first hearing screen. But otherwise is doing well, lots of skin to skin with Mom and Dad , meeting people who love him Mom is finding breastfeeding him difficult due to his lack of muscle tone and small mouth. I am encouraging her to pump and brought her some herbs to encourage her mill supply (as a Mom of preemies I know what its like to have to build a supply without actually breastfeeding). . .
So there's the backround. It was totally unexpected but they are handling it well.

My question: Is there anything else I can do to help this family? How about the transition home? They have 4 other kids, should I find her help? Any resources I could direct her to? I love the family dearly and just want to help this transition as they get used to the idea any way I can.

Thank you

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Old 05-06-2013, 09:00 AM   #2
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Re: Downs Syndrome

They will probably get a referral to early intervention from the ped but if they don't you can suggest it to them since chromosome abnormalities have a high risk for developmental delay.

If the child has any special medical or behavioral needs (probably won't know that for another year) the most supportive thing you could actively do is learn the baby's special needs so you can babysit for them even if it is only 2-3 hours a month. It is incredibly hard to find a babysitter that can handle special needs children. Most parents have to rely on family or respite funding both option are few and far between sometimes.

As far as pumping my son was so sick we never even got to try latching and a hospital grade pump was more than enough to establish and pump sufficient amount of milk for me. She may just need to rent or buy a hospital grade pump. I seem to remember reading somewhere insurance companies are now required to cover the costs.

Has anyone checked the baby's mouth for abnormalities? A pediatric Speech Language Pathologist would be best for that type screening. The hospital may have one on staff if the pediatric's program is big enough. She can ask the nurse about SLP staffing.
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Old 05-06-2013, 09:14 AM   #3
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Good advice. If he truly has hearing issues they'll need to address that, Signing Time DVDs are amazing for parents and kids. Early intervention for sure. Freezer meals, babysitting. Sounds like there will be lots of appointments. If there is a group of you who would be available to watch older kids for that I'd try and organize a babysitting pool so mom has someone she can call when needed. A sympathetic ear. They are optimistic and in love with their new baby, but having a special needs child is even harder than just having a child, and there will be rough days. Support and love are always appreciated
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Old 05-07-2013, 01:21 PM   #4
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Thanks! Great points.

Im lining up childcare for their 4 big kids, meals and cleaning help as the adjust at home.

He did pass his hearing screen! Yay! They are adjusting to life the best they can. Great hearts and attitudes and ton of people willing to help.

He meets with the heart specialist at one month old. Hes latching on for nursing but not great yet, but praying he takes off soon.
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