Am I crazy? inducing lactation with a cleft palate?

[@llli*96ucfgrad]

Hi! I'm wondering if any of you have experience dealing with inducing lactation and using a SNS for a baby born with a cleft palate.

I am working with an agency and they just asked us if we would be open to a particular situation where the sonogram showed that the baby may be born with a cleft palate. The baby is due Sept 6th...and I'm still working so I probably won't start prepping with a pump until about a month to 6 weeks before the baby is due.

I was hoping to induce lactation, this is my first baby so I don't have prior experience breastfeeding, and my doctor (and I) don't want to use meds to induce lactation. Am I crazy for signing up for a situation where it is already going to be really difficult and then add the cleft palate situation???

Advice please!

[@llli*aprilsmagic]

Oh mama, I think I finally found someone tougher than me! My fourth son was born with a CP, and I have EPed for him for 17 months.

I tried to use an SNS, but it didn't work that well. The Lact-Aid is the one you would need, and you have to turn it upside down. It leaks in that position,and I found that really frustrating as I pumped, spent time with him at the breast with that, topped off and repeated every 1-3 hours around the clock, and it was annoying for half the milk to end up all over; it made it hard for me to tell how much he actually got, our doctor was all over me about his weight anyway (because many CP babies do have weight problems). It didn't last long, and the death knell was that I accidentally filled the bag with milk that was a bit old, and I have a lipase problem. He started refusing to go to the breast after that because he had gotten some that tasted awful apparently.

I think a better question would be are you willing to EP for your first baby? Because that is basically what is probably going to happen in the worst case scenario. You might also be able to try the SNS with formula to at least have the semblance if inducing lactation doesn't work for you.

There are photos in the cleft palate thread about my set up with the SNS I think. It was such a haze, and I was so sad and probably even depressed that I can't keep track

Cleft babies are a lot of work. I was stunned to find out just how much more work bottlefeeding is, and then add in the complications of a cleft palate, and it's even harder. The risk was high for aspiration (it happened several times) with pneumonia (that didn't happen), failure to thrive, etc, that everyone talks about with cleft babies, and now we are facing speech issues -- he is delayed, and is it because he can't or isn't ready -- some weird dental issues and something with his ears (he hears fine, but he continually has something coming out of his ears).

And would you want to choose that for a first baby? I don't know. Only you can decide. There are many mothers who had a CP as a first baby, pump or formula feed, survive and go on to have a second and do fine.

I had it the other way, and it is way hard....and I envied those moms who had the CP first. Because I knew what the difference was. It was really hard to be there for him because of the routine required to keep him alive. The constant pumping and feeding took a huge toll on us all, and it wasn't until he was past the palate surgery and I could back off on pumping where I felt like I could finally be the mom I know I can be and am to this kid.

I will tell you, as I'm sure your doctors told you, that they canNOT make a firm CP diagnosis prenatally. Ours went back and forth. One tech pulled me aside and said she was sure herself, but she couldn't say that in front of the doctor. There are a few syndromes related to CP that you should be aware of, such as Pierre Robin, but those cannot be diagnosed prenatally either.

Cleft babies are special though. If you decide to proceed, it is a huge roller coaster of a ride that doesn't end. We are facing life long changes, even though my guy is doing well. But it may be the best decision you ever make. My baby Gav is an angel. I didn't want to have another baby, and I thought about adoption for a while after we found out about hus defect( those hormones and sleep deprivation will do that) because I was not sure I could do it, but having him helped me find things in myself I never knew were there, even after everything I have been through in my life. And I know he was meant to be with us and love having him here.

for even considering a CP baby, much less inducing lactation and possibly needing to use supplemental feeders and an SNS full time!

[@llli*mommal]

Susan gave you wonderful information, but I think the heart of her post is this:

I think a better question would be are you willing to EP for your first baby?

With a baby with a cleft, there's a good chance that exclusive pumping would be the only way your baby would get breastmilk. EP is challenging, and I am sure it's not what you envisioned when you dreamed about nursing your future baby but on the other hand you do have time to get this all sorted. This baby isn't due for a while. That means you have time to induce lactation, see how well inducing works, decide if this baby is destined to be your baby, and then, when you have your baby (whether it is this baby or another baby), see how well things work out with nursing.

Inducing lactation is a lot of work, particularly without using the drugs, but I think it makes sense to at least try it and see how far you get with it. Maybe you'll win the jackpot and everything will go perfectly- you'll achieve a great supply, the baby will be born able to nurse. Or maybe you'll get a smaller payoff- you won't get a full supply but you'll get some milk, and so will baby, or baby will not be born able to nurse but will still get breastmilk. And maybe you'll draw a losing ticket, and you won't be able to introduce lactation and the baby won't nurse- but you'll never wonder "what if?"

[@llli*joe.s.mom]

Inducing lactation is a lot of work, particularly without using the drugs, but I think it makes sense to at least try it and see how far you get with it. Maybe you'll win the jackpot and everything will go perfectly- you'll achieve a great supply, the baby will be born able to nurse. Or maybe you'll get a smaller payoff- you won't get a full supply but you'll get some milk, and so will baby, or baby will not be born able to nurse but will still get breastmilk. And maybe you'll draw a losing ticket, and you won't be able to introduce lactation and the baby won't nurse- but you'll never wonder "what if?"

I think it's AWESOME that you are even contemplating inducing lactation for an adopted cleft palate baby. Far from thinking you're crazy, I think you're clearly incredibly dedicated and brave!

There are so many variables here, it's really hard to say how things will go for you. Inducing lactation itself is not an easy business (particularly without drugs), and breastfeeding a CP baby is also not easy - sometimes, it's just not possible, and you have to EP. However, that's not to say it's not worth trying. Crazier things have happened, you know? And I applaud your dedication!

[@llli*aprilsmagic]

I guess, to clarify my long ramble up there, would be to ask the following questions:

1. Are you OK with dealing with a cleft palate? The medical aspects mean you need to locate a cleft team and arrange for evaluation in the first week or so of life. You need to be comfortable with these folks as you see a lot of them. If you decide this child is yours, I can direct you to places where you can start finding a team. You need to learn what you might face as a parent of a clefty.

2. Then there is the emotional aspect. You will be giving up some dreams. You wont have a healthy baby. If the lip is affected, your baby looks different, and manybparents struggle with that. Your baby may have FTT. Your baby may have hearing problems, among other things. Your baby will eventually need surgery, and it is heartwrenching to hand over your baby for surgery and then to see the pain afterwards. You will be giving up the idea of breastfeeding directly in all likelihood. It's possible -- and you never know until you try -- but most babies with a cleft palate can't. If breastfeeding directly was your dream, are you OK in letting that go? I still struggle with that every.single.day. If you aren't ready to let that dream go, that might be an indication to pass and wait for the next situation.

If you aren't ready to deal with a cleft, don't. It is a lot of work. And I'll be honest...would I choose to have a cleft baby? No. Not after having had one. I'm honestly scared to have another baby because of how much work this one was But I have a good friend who adopted a cleft baby from China, and she wants to do it again (she did not induce lactation though).

3. Are you willing to EP if the induction works? Because that might be what happens. The best case scenario would be baby can nurse, you have successfully induced, but anything could happen.

[@llli*krystine]

I wouldn't say it was crazy, but I would carefully consider what the previous posters have added. I'm a speech pathologist so I do have coursework and clinical experience with cleft palate and although that was before I had my daughter and breastfed, we were basically taught "here's special bottles you give to babies with cleft palate" and I don't know that I've heard of a baby with cleft palate able to exclusively successfully nurse directly from the breast.

I agree with being willing to EP, if you are able to induce lactation, and honestly, be prepared that even if you're able to make milk for your baby, it might not be enough for that to be his or her only source of nutrition (at least I'm pretty sure it's hard to induce lactation and work up to a full supply, but that's just what I've heard from an IBCLC MD and I have no personal experience in inducing lactation, just a lot of pumping experience and that was hard work for me to keep up a supply with different issues my daughter and I had together, although we worked through it and it was worth it).

[@llli*96ucfgrad]

Thank you ladies!

Well, it turns out that God decided this one for us. My husband was working out of town and right during the few hours that we had to respond to this adoption option, everything turned topsy turvy at his job making it impossible for us to discuss it. We weren't able to respond in time to be considered for this adoption option, but I am thankful for the opportunity to research about CP and hear from you all about what would be involved.

I feel much more prepared to provide an answer if we get another call. Thank you for taking the time to respond in such detail!

(And yes, I am ready to deal with me perhaps producing little or nothing at all, would hope supplement with breast milk from a friend or with formula as a last resort.) Lots of sacrifices in this adventure of motherhood!

[@llli*mtmama]

let us know how things go in the future. wishing you the best

[@llli*darillyn]

I'm an adoptive mom of six children (who have given me three beautiful grandchildren, so far). One of mine was born with a serious birth defect, it wasn't the same as a cleft palate, but was extremely challenging.

Maybe I will tell you what I would do, if I was lucky enough to be adopting another baby and had a good chance of adopting a baby with a cleft, due in two months.

First, I would get some domperidone and a good, double pump. I know you said you and your doctor don't want to use meds. If the baby was going to be able to suck normally, I'd say no problem at all. I never even had access to domperidone while my kids were little. I always had to supplement until they were on a significant amount of other food, but they got plenty milk from me to be very beneficial. I didn't pump much, and didn't even know about five of them more than a very short time beforehand, but after a few days of nursing on demand, with the Lact-Aid, I all ready had drops of milk. Of course, a baby with a cleft palate and/or lip usually can't suck well, so you would be looking at pumping. Very few moms who have never given birth and breastfed before are able to pump more than drops, just pumping alone. The pump just doesn't have the same effect as a baby at increasing prolactin. However, if you take domperidone, that creates the increase in prolactin. Most moms who take domperidone and pump are able to produce at least a few ounces a day after roughly 4-6 weeks. Since a baby with a cleft is at very high risk for infections, this baby will have even more to gain from human milk than a baby born without a defect. You may want to reconsider using medication, under the circumstances. The only one I suggest taking, however, is domperidone.

When I got the baby, depending on how severe the cleft is and all, I would offer the breast just for comfort, even if he couldn't suck. Don't underestimate the benefits of nurturing at the breast! I don't know for sure, but can't surgery sometimes be done quite early that can make it so that the baby might be able to suck?

Another thing to consider is milk donation, if you can find someone close to you who has milk to share. Even if you could only give him four ounces of human milk per day, and the rest formula, it would be a big help in protecting him from infections. There are a couple of sites online that match up moms with extra milk with babies who need it. I would only go with the ones who want to donate the milk, though. I'd be suspicious of someone who was asking $2 or$3 per ounce for it. Most of the women who do it are probably fine, but when it comes to money, you never know. What most moms do is pay all of the cost of collecting, storing and shipping the milk, and give the donating mom and her family gifts, in lieu of payment. I don't know if LLL wants anyone to talk about milk donation here, these days, or not, but here's one link http://milkshare.birthingforlife.com/

And, you are certainly not crazy to want to induce lactation!

[@llli*96ucfgrad]

Wow. Congratulations on being gifted with 6 children. What a blessing!

The information that I gathered showed that a cleft lip would be a situation where they could do a surgery early on in infancy that would make breast feeding tricky but possible. When there is a cleft palate instead of a cleft lip or in addition to a cleft lip, then there are significantly more surgeries and challenges and therefore significantly more difficulties in breast feeding. Incidentally, I also learned that it's the 4th most common birth defect - a lot more common than I realized.

I'm curious about what you said here:

Very few moms who have never given birth and breastfed before are able to pump more than drops, just pumping alone. The pump just doesn't have the same effect as a baby at increasing prolactin.

That seems to conflict with what I have heard.... and I heard it from a doctor who's wife had induced lactation for their adopted children. He said that without drugs my body wouldn't produce colostrum, but as soon as the baby was suckling I would produce plenty of milk especially if I had "primped the pump" so to speak by pumping ahead of time and using herbs.

Honestly, I'm really not comfortable taking domperidone. I'm the type of person that doesn't even like taking tylenol. I only take meds when I absolutely have to. I want to breast feed, but I'm not ready to deal with the risks of taking domperidone.

I did hear that there's another drug that might help, but I need to look into that.

And yes, I am looking into getting breast milk to supplement whatever I produce. I'll have to work on that once I know that I'm actually bringing home a baby.