Anyone with experience being a doula for a woman with a special needs baby?

[holly6737]

If everything works out I'm planning on being a volunteer doula for a woman who's baby has trisomy 21, AVSD and IUGR. I've never attended a birth before with a special needs baby. I imagine it would just be like any other birth with more medical personnel there afterwards. Anything I should expect? Any advice?

[Jyotsna]

Holly,

Is there a definate diagnoses of downs? IUGR can show it's face in many ways. Baby's weight could be too low, baby could have brain damage, or many other things. Is there a reason for IUGR? Can you support the mother in proper nutrition? I am not sure how far along mom is, but this is typically the reason for IUGR.

At the time of birth, if the baby is diagnosed with downs, I would think that resources to the Down Syndrome community would be especially helpful. Also, some babies with Downs also have heart conditions. Even if the baby doesn't have IUGR too, the baby will likely spend some time in the NICU. IUGR will complicate things.

The mother will need support for ways to breastfeed, or at least to pump her milk for her baby. Obviously a referral to LLL is important. It is likely that the mom will get a visit from a Psychologist who is on staff, and if she doesn't , try to get one arranged.

But lastly, the mother has probably been worrying about all of these things, and needs help with normalizing the pregnancy, and looking forward to the time when she will finally see her baby. Some mothers are so obsessed with the special needs condition of the baby, that they shut out their happiness of their pregnancy and arrival.

How far along in her pregnancy is she? How did she get get the trisomy 21 diagnoses? Can you help her with her dietary needs at this time? Prenatal vits?

[holly6737]

I'm a volunteer doula, so the first time I meet her might be in labor. I'm trying to arrange a prenatal meeting though. She's due next week. I'm not sure about the IUGR diagnosis or how they came to that conclusion. I do know that the baby definitely has Trisomy 21 and Atrioventricular Septum Defect. I'll make sure to make a LLL referral. I'll also check out some Trisomy 21 resources in the community. Maybe she's been in touch with someone already. Thanks for the advice.

A question, though: Does a trisomy 21 always mean the clients are treated as high-risk? Or only if there's a heart problem, other problems that go along with it? Do you think she'll have any interventions that a low-risk woman would not? (I figured they'd probably have a IFM in with the AVSD, but anything else?)

[holly6737]

Nevermind. I just called her and she had the baby. for me for her though. She said the birth went very well, but she did end up having a c/s. Something happened when they started pitocin. Baby is doing well though she said!