Prepping for BF challenges w/ cleft Lip & Palate baby boy

[raspberry.swirl]

Hello there,

I am in the 12/10 DDC and learned about baby Julian's CLP (cleft lip and palate) at the 18 wk anatomy scan. This week we further confirmed the inclusion of the palate.

I live in L.A., CA and have already identified some potential resources. A mom in AL, is sending me Habermans (special bottles). I would LOVE to still BF but am prepared for the disappointment. Just now I looked down and saw that my right breast is leaking. I am just 26 weeks! I guess the colostrum is building.

Is it possible to start pumping before he's born in December? Is it recommended-considering that he'll have special feeding needs?

What device is used to place in the mouth when there is a palate to allow for proper suction?

I think I really need to speak to a lactation consultant with strong experience with cleft babies. If you can recommend someone, even if they're out of state, I would love to chat.

Thanks for the support mamas!

-Vanessa

[sahmmie]

bumping this for you.

I don't have any experience with this so I can't help, but hopefully someone here can.

[Natanya]

My son was born this july with an undiagnosed cleft palate...no cleft lip. i had no idea for about 5 hours (he was born at home) and just kept trying to BF but he just had no suction. I looked in his mouth, and to my amazement...he had a huge cleft palate, soft and hard palate. I called my ped right away. She was great and said I could just hand express colostrum for the next day or two until I could come to her office. I call a lactation friend of mine and she set me up with a Haberman...an absolute necessisity. i really have no idea how people feed their children with cleft palates without it.
I have lots of resources now, although I can not BF. i pump everyday, every 2-3 hours and I'm in Week 10!! i would love to chat more so you can PM me anytime. I can also give you the name of my LC. She was a really big help. I am now trying to find someone who knows anything about BF after surgery. I would love for this to happen as I BF my first son till he was 2 and don't want to gip this littleman. He is scheduled for surgery in April, at 9 months old.

[Natanya]

Oh and BTW, I wouldn't pump before he comes but they do make these really neat milk-saver breast pads...you could save the colostrum that's coming out that way. http://www.mymilkies.com/

[2boyzmama]

Cross post this over in special needs parenting, there are a few of us over there with lip/palate babies of varying types and degrees.

My middle son has a submucous cleft of his soft palate, has velopharyngeal insufficiency, and had a lip defect (not a traditional cleft, but did require surgical repair) It is HARD to breastfeed cleft babies, but some can!!

I will write in more detail later (nursing youngest to sleep right now) but for now...

No, don't start pumping before birth, it could cause contractions.

Start pumping immediately after birth.

Get a Haberman, it's a must-have for cleft-effected babies.

Get in touch with an LC who is familiar with clefts NOW. You might have to call around to find one. Even if the LC is out of state, they can help over the phone, they can coach your local LC, etc.

Start dr shopping now, you need to find a breastfeeding-friendly ENT and plastic surgeon. There is a cleft palate team at our children's hospital. The head surgeon is not that breastfeeding friendly (or friendly at all really) but the developmental ped and the nutritionist on the team are, and they helped me a lot.

Potentially seek out donor milk in case it turns out you need it. Also inquire about getting milk bank milk, many insurances will cover it for special needs babies.

Got to put baby to bed...post in special needs, and I'll try to be back soon to respond more.

[sonrisa]

Hi Vanessa-

This is Abigayle from your DDC and although I do not live in So. Cal nor do I have any experience with cleft lip and palate, I did have many challenges breastfeeding my dd and by trying to prepare the best I can, I read an article posted by another mdc mom, written by an IBCLC in southern Cali, if I lived there I would go see her, her name is Ellen Petok, I think she would be a good contact for you. She wrote a wonderful article on moms who suffer with insufficient glandular tissue.

Here is a link to IBCLC's in your area

http://www.breastfeedingtaskforla.or...10%20DRAFT.pdf

and here is a copy of the article written by Petok and two other IBCLCs.

http://www.sonic.net/~mollyf/igt/

HTH and hoping for the best,

Abigayle

[sonrisa]

Forgot to include this link

http://www.thepumpconnection.com/

[raspberry.swirl]

Thank you so much mamas! This is totally what I was looking for!
I appreciate the support and will PM you for further questions.



Vanessa