Trisomy 13

[Guest guest]

Hi everyone.

I'm working with a mom whose baby has Trisomy 13. I have permission to share in

hopes of finding another LC who has worked with a baby with this issue.

Baby is 7 weeks old and was born at 35+5 Gestation. Has been out of the NICU two

weeks. Has been occasionally breastfeeding and does not have any heart issues. I

saw them today. Baby sounds horribly congested and mom reported that wasn't

present in NICU or upon release, but has steadily gotten worse over the past two

weeks. Baby couldn't latch and had trouble bottle feeding due to needing to

breathe through her mouth.

I found an obvious TT (Ped saw it and referred to ENT who she will see on

Tuesday), bubble palate, heightened gag reflex, and a raised center line down

her hard palate. I tried feeling for a cleft, but did not feel one. So if one is

present it is very small. Baby does not appear to have hypotonia, but is

having trouble keeping her upper lip flanged out. I struggled to pull it out

during bottle feeding.

I suggested try breastmilk in the nose and using the bulb syringe before

feedings. Also I discussed the dancer hand hold with her to try to help support

her chin if needed.

I'm struggling to find any information on this condition and breastfeeding.

Seems so few survive. Mom has felt the medical profession didn't want to waste

time on her baby because they expected her to pass away by now. Mom has a rental

pump and is able to provide all the milk her baby needs right now.

The mother didn't tell me about her daughter's condition till I arrived. I'm not

sure if I would have really been able to figure out something was wrong on my

own. She doesn't look bad, but does have a week cry. Baby saw doctor two days

ago and is gaining enough.

If any of you have some ideas I would love to hear them. I told the mother I

would write up something for the ENT so my concerns are addressed. I'm working

for free right now since I haven't finished setting up my PP. I'm helping her

under LLL. It really goes over the SOC of LLL, but I really hate to see this

family get any more run around. Mom is determined to give her daughter the best

of her.

Thanks in advance.

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