Re: help with newborn with Trisomy 18

[Guest guest]

I would contact the Le Leche League. Sometimes they don't always call you

back right away but they can really be of great help.

Kayte

help with newborn with Trisomy 18

Five days ago I gave birth to a baby diagnosed with Trisomy 18, which is a

chromosome disorder, similar to Down's syndrome, in that she has an extra

chromosome.

My baby is having feeding problems, unable to suck at the breast, so I am

pumping my milk and feeding her with a bottle. She is slowly able to take

more breast milk each day, but the pediatrician wants to supplement my

breast milk with a cow based lipid supplement that has chemicals out the

yin-yang. He wants to do this to increase the caloric content of the baby's

feedings so she can gain weight more readily. Could anyone give me some

suggestions on better ways to increase the fat content of my milk or

something more healthy to add to the breast milk?

Thank you for any help you can give.

Corrine

[Guest guest]

corrine:

first off, yay for your daughter who is going to be soooo much healthier

because you know enough to think about this stuff!!!

first, i'd ditch that doctor, or at least seek out a naturopath or a

home-birth midwife or something like that for a different and more

supportive perspective. i get a little anxious when i hear of a baby that's

" unable to suck at the breast " - unless she has cleft palate, i don't think

that's true. it may just be that you're having trouble -- amber had trouble

with how extra-huge my nipples were at first, and i spent all my time doing

nothing but nursing. we didn't supplement and she's fine - it all worked

out soon enough. granted, if the baby is losing too much weight or whatever

- i mean, i'm not saying you should be cavalier about it...just that i

would seriously question that the baby is really unable to take the breast.

i should also note, just in case this is your first baby, nursing really

HURTS for the first week or so (or in my case it was nearly 5 weeks!) and

that's just the way it is. i shook with pain and crying every time i

nursed, but it *does* pass and it *is* worth it and now i nurse in my sleep

(litterally!).

anyway. to increase caloric content, i'd do it with natural things: coconut

oil, kefir, maybe softened ghee? it's hard with a baby that young, but

coconut oil is definitely safe - and if that's all you feel comfortable

with, then go with that. and of course, up your caloric content too.

instead of buying those supplements, spend the money on some REALLY high

quality food - get good fatty steaks (zinc and iron!), get coconut, get raw

milk (you can even buy it online if you have to) and eat tons of butter on

lots of green veggies, broccoli in particular...eat kimchi...and just eat

and nurse, and drink lots of water - don't worry about chores or anything

else for now. it seems to me that's a far better way to go than all this

pedi stuff...

where are you? if you want to talk, or need any encouragement, ping me and

we can talk on the phone...

-katja

At 01:47 AM 5/6/2004, you wrote:

>Five days ago I gave birth to a baby diagnosed with Trisomy 18, which

>is a chromosome disorder, similar to Down's syndrome, in that she has

>an extra chromosome.

> My baby is having feeding problems, unable to suck at the breast,

>so I am pumping my milk and feeding her with a bottle. She is slowly

>able to take more breast milk each day, but the pediatrician wants to

>supplement my breast milk with a cow based lipid supplement that has

>chemicals out the yin-yang. He wants to do this to increase the

>caloric content of the baby's feedings so she can gain weight more

>readily. Could anyone give me some suggestions on better ways to

>increase the fat content of my milk or something more healthy to add

>to the breast milk?

>Thank you for any help you can give.

>Corrine

[Guest guest]

>. Could anyone give me some suggestions on better ways to

>increase the fat content of my milk or something more healthy to add

>to the breast milk?

>Thank you for any help you can give.

>Corrine

Corrine:

First, my heart goes out to you. My son was born with

difficulties, and ended up with a gastro tube, fed

off those canned supplements. I finally got up the nerve

to ditch the cans and make my own supplement for him,

which took a bit of experimenting!

IMO the best fat for babies is coconut oil. MCT, a fraction

of CO, is commonly fed to babies with digestive problems

(and there is a lot of it in human milk). The formulas

have gone to " microlipids " though, tiny small chain fats,

because MCT can dissolve plastic tubing (and a lot of those

kids are fed via plastic tubes). Now coconut oil is solid

at room temp, and I'm not sure how it would mix with milk anyway,

so delivery might be a problem. MCT mixes easier (and you can

buy it at www.parrillo.com).

My son is 7 now, and is eating more and more (and is coming

along fine). But the formula we finally came up with is

rice, kefir, hamburger, vitamins, coconut milk, vegies, fruit ...

all blended in a vitamix until it homogenizes. I don't

think that would work for a small baby. Kefir has been used

with premies though, and it is great for gut development and

to protect against the various bad bacteria and rotoviruses that

go around. If you'd like to correspond privately, feel free.

Heidi Jean

[Guest guest]

Dear Corrine,

re: getting enough milk / calories into your little one. Don't hesitate to

simply " give yourself over " to full-time (and I do mean _full_-time)

nursing. We coined the term " boobie-trapped " to describe the situation of

me being pinned down for hours at a time by a nursing babe who then fell

asleep at the breast and then I was too reluctant get up and risk waking him

or her (and starting the whole nursing cycle again...). Keep a large bottle

of water and interesting reading material by your nursing chair and just go

with it. This phase will pass all too quickly... There is literally

_nothing_ more important in your entire world than giving your little the

best possible fuel for growing. It's a big, time-consuming job, and you are

the only one equipped for it. Enjoy it!!

I know you didn't mention nursing pain (yet), but let me sing the praises of

something my lactation consultant did not approve of: silicone nipple

shields! They made a world of difference for me being able to get used to

nursing. Neither of my two kids were good at latching at first (and that

can contribute to soreness...), so we pumped and finger-fed for a while

until they figured out latching well (this got dh involved with feeding, a

Good Thing). (Finger-feeding is just using a supplemental feeder,

essentially a large syringe, with a tiny feed tube taped to your finger.

Sound odd, but trust me, they figure it out just fine... I thought it was a

better choice than using a bottle...) Some lactation consultants will fret

about " nipple confusion " if you use a shield, but it's a minor problem

compared with the possibility of being so discouraged by the pain that you

might be tempted to give up nursing too early...

You might also want to check into a Habermans (?) bottle -- it's a special

design for babies having trouble nursing. I found mine in the hospital

shop, where they had pumping rentals and supplies.

I remember reading somewhere that some of the Downs babies had a much higher

than normal requirement for certain vitamins (A and E, I think) and that by

supplementing with those, they " reversed " their Downs-signature facial

changes, etc. You'd have to find some Downs-dissidents site to check the

details, but there are " we won't take this lying down " Downs families out

there, and I'll bet they have some good info for your situation too.

good luck!!

help with newborn with Trisomy 18

Five days ago I gave birth to a baby diagnosed with Trisomy 18, which

is a chromosome disorder, similar to Down's syndrome, in that she has

an extra chromosome.

My baby is having feeding problems, unable to suck at the breast,

so I am pumping my milk and feeding her with a bottle. She is slowly

able to take more breast milk each day, but the pediatrician wants to

supplement my breast milk with a cow based lipid supplement that has

chemicals out the yin-yang. He wants to do this to increase the

caloric content of the baby's feedings so she can gain weight more

readily. Could anyone give me some suggestions on better ways to

increase the fat content of my milk or something more healthy to add

to the breast milk?

Thank you for any help you can give.

Corrine