Breast Feeding and CF

[hbendz]

Hello!<br>
<br>
I plan on breast feeding Maggie-Faye when she arrives.  I am
looking for any advice anyone has on juggling enzymes and breast
feeding.<br>
<br>
------------------------------------------------------------<br>
Holly, soon-to-be mom to Maggie-Faye due September 11th

 

[Haileysmommy]

I breastfed Hailey for 6 months. It went great. Just make sure all of the enzymes are down because they can cause a little bit of chafing on the nipple. Hailey was in her best of health the months she was breastfed.

 

[hbendz]

That is so great to hear, Leeann!<br>
<br>
Thank you for the tip.  My goal is to breastfeed for a year.
 So, we shall see!  Any other tips you can think of, let
me know!<br>
<br>
-------------------------------------------------<br>
<br>
Holly, soon-to-be Mom to Maggie-Faye due September 11th

 

[JRPandTJP]

Holly, congratulations on your little one and for deciding to give her the best nutrition possible. Many moms on this site have breastfed. I breastfed part-time for 6 months with my daughter (now 6) and fully breastfed my son w/ CF until he was 19 months old. Of course he started solids at 6 months, but you know what I mean ;-) lol

You can absolutely breastfeed a CF baby and in fact it is THE best thing for them for so many reasons (high in easily digestible fats and proteins, immune properties unique to breastmilk, comfort and bonding, has it's own enzematic properties and usually require less enzymes than formula, and so much more).

I am putting together a web site to support moms of CF babies and share information on breastfeeding and cystic fibrosis. There will be around 15 stories of moms on this and other boards who have, even against the odds, breastfed their children. I will also have tons of resources, studies and links for the breastfeeding mom. I truly hope it fills in the gap on information and will help many moms like you who wish to breastfeed. If you would like to be on my mailing list to receive an announcement of when the site is available please email me at jody@meta4tech.com.

Are you going to visit a Cf clinic prior to her birth? It is a good time to state your desire to breastfeed and feel them out about their knowledge and opinions. Some clinics are very pro-breastfeeding others (like mine) really need to be educated. Also, finding a La Leche League group can help. They are really helpful at working through issues and answering general breastfeeding questions before and after birth. Plus, being around other moms who breastfeed really helps in the beginning. You are at a real advantage knowing prior to birth that your little one has CF, she will be able to benefit from enzymes right away if they are needed (not all babies need them it depends on their mutation and presentation) and you have us ;-)

Please feel free to ask me anything.

Warmly,
Jody

 

[jonandlindsay]

Hi Holly -

I agree with everything that Jody said. I actually breastfed my daughter Ella (now 2-3/4) until she was 2. She wasn't diagnosed until she was 6 mo. old, so I really had no idea about her CF until then. She had slight pancreatic insufficiency, so wasn't growing as well as she should, but certainly wasn't malnourished or severly failing to thrive. She also had never been sick a day in her life... not even a bit of a runny nose. I believe that is because I was breastfeeding. Before Ella was born I did a lot of reading, and the research behind breastfeeding was so compelling there was no way I wasn't going to do it. Research shows that breastfeeding strenghthens the lungs (and many other organs) and illness immunities are passes from mother to child.

After Ella was diagnosed, we began giving her enzymes with her solids, but only a very very small amount when I nursed her. Our doctor told us that breastmilk is the most broken down form of food you could possible give your baby and is easier to digest than anything. A few years back, parents of CF babies were told to feed their babies predigested formula, which was basically the same as breastmilk.

Ella went almost two full years without having any kind of a cold or cough and without antibiotics.

Plus.... breastfeeing is so much cheaper and convenient than the alternative.

Best of luck!

~Lindsay
Mom to Ella, 2-3/4

 

[Scarlett81]

I know I'm not in the same boat as you, but-

I plan on being a mom soon, and I want to breastfeed. Of course-I'm not going to do it if it puts me or the baby in serious danger-like if after the birth I'm ill and need a certain IV antibiotic.-(so I'm being reasonable about this). But the one thing my doc and I already disagree on is that. I don't think she even wants me to consider breastfeeding. But I want to. Absolutely. There's so much research as to why breastfeeding is better.

Aiside from the health benefits to the baby, the bonding...why shouldn't I be able to experience that?

Jody-your idea for a website sounds-oh, so nice. Maybe you could consider an area for moms with cf?

 

[Haileysmommy]

I just wanted to add that I would have breastfed longer but it was time for an up in enzymes. Hailey began to associate breastmilk with stomach cramps. I attempted to pump but she was taking 40oz/day and I felt like I was always attached to a machine. If we decide to have another I will know a little better what signs to watch for so that my baby will want to continue to nurse.
Hailey was not sick once in the 6 months she nursed. 30 days after she weaned she went on antbiotics for recurring lung infections and has been on them off and on for the past year. She was probably on them for a total of 7 months.
If you have questions or concerns feel free to PM me anytime. I would love to help in any way I can

 

[Jenica]

Hi, Holly. I am still breastfeeding my daughter (11 months old next week), and I agree that you may meet some resistance with your CF team. Of course they want what is best for child, but I also think they aren't comfortable not being in control, and with breastfed babies, you can't measure and put numbers on things like you can with formula.

As far as enzymes are concerned, it is really tough with little ones, because they don't always follow the same pattern. Your daughter might nurse for 30 minutes one time, then lose interest and nurse for only 5 the next. The hardest thing here is figuring out how many enzymes to give her before she eats. One thing you can do is give half of the regular enzymes before she begins nursing, then if she seems to be eating very well, give her the second half when you change sides. Our doctor suggested this approach, and it worked pretty well for us for awhile.

Best wishes on the last couple months of your pregnancy, and any other questions, feel free to ask. I ran into a few sets of different problems, nursing each one of my daughters, but there were always solutions, it was just a matter of talking to enough people to try and figure them out.

 

[hbendz]

Thank you all for the great advice and insight!  Yes, my
husband and I are meeting with the CF clinic at Stanford August
25th.  So, as long as she isn't more than 2 weeks early, we
will be meeting with her CF clinic prior to her birth.  Word
has it that the clinic at Stanford approaches treatment
aggressively.  So, I am hopeful they will be supportive of my
breast feeding and not fight me.  If there are any others
thoughts from you on what we should make sure and ask during that
first visit, I would love to hear them.<br>
<br>
I am so grateful for this support!!<br>
<br>
------------------------------------------------------------------<br>

Holly, soon-to-be Mother to Maggie-Faye due September 11th

 

[JRPandTJP]

Thank you Scarlett...are you aware of Holly Laughlin's web site? She is a great resource for breastfeeding as a CF mom. She nursed her daughter until she was around 3. She is also a LLL leader and has tons of resources for CF mammas on her site. She also had to deal with issues like antibiotics and CF related stuff during the course of nursing. Her site is www.geocities.com/MurrensNatureMama
I will be linking to her for sure and if I can have some stuff on my site, it would be great.

You absolutely can do it and it is your decision, not your Dr. With good support there are ways around almost every issue.

Holly, you may want to talk to Emily Wiegert (due in Aug) and see what suggestions she has for the first clinic visit as she just went through it. I think there was a post a month ago with lots of great suggestions.

Jody