Excess Lipase: My Journey to Becoming a Milk Donor
Update October 2014: I have taken my experiences with excess lipase activity, combined it with interviews with trusted medical professionals, and turned it into a 40+ eBook. If you are looking for more information about excess lipase activity, breast milk donation, and support from a mother who has been there, then this eBook is for you.
Click here to learn more about my eBook “Why Does My Breast Milk Taste Bad?”
Excess Lipase: My Journey to Becoming a Milk Donor
When I realized that I had a problem with excess lipase in my breast milk, I was devastated. I had a ton of milk in my freezer that had a bad taste and my little girl wouldn’t drink it. I was tremendously upset that I had all this milk that she wouldn’t be able to take advantage of in the future. However, what really brought me to my knees was the thought of having to throw it all away. I just couldn’t. Thankfully, someone in this wonderful LeLeche League forum suggested donating to a milk bank. Once I realized that becoming a milk donor was an option, I knew it was exactly what I wanted to do. I just had to figure out how to do it!
I started out by visiting the website for the Human Milk Banking Association of North America to find a milk bank close to me. I ended up donating to the Mothers’ Milk Bank of Ohio. I called their number listed online and started the application process. (Please Note that this blog post is about my experience donating to the Mothers’ Milk Bank of Ohio. If you choose to donate your breast milk, the details of your experience, application process and milk bank may be different. )
Becoming a milk donor was a 6 step process.
Step 1 – The first time I called the milk bank to ask about being a donor they conducted a 5 minute interview. They covered basic health questions as well as things that might be a red flag for being approved (medications, illnesses, traveling to certain countries, etc).
Step 2 – After passing the initial interview, I was sent an extended health interview in the mail. It was a several pages long and I mailed it back. Included was a form that the milk bank would send to my OBGYN and my daughter’s pediatrician to get their stamp of approval for me to donate my breast milk. I remember that I felt very nervous when I received my packet in the mail. I went over and over and over the pages to be sure everything was filled out correctly and I didn’t miss anything.
Step 3 – Diane from the Mothers Milk Bank of Ohio called me to let me know that I had passed the extended health questionnaire. She was calling to explain the next step of the process and to let me know that she would be shipping me some things. What was the next step? A blood test.
Diane said that this part of the process is often the hardest. She was sending me the vials and return shipping supplies that I needed, but I would need to find someone to donate a needle, tourniquet and their time to draw my blood. My first thought was to call one of my nurse friends, but you can’t just take a needle home from work without your employer getting a little upset. 🙂 I ended up having one of my lactation consultants at the local hospital help me. By that point they all knew exactly what I was dealing with and was more than happy to help me out. My blood was drawn; I shipped it off to Texas for testing and then waited to here the final verdict.
I was approved. I clearly remember driving home and listening to the voicemail from Diane telling me that I was officially approved as a breastmilk donor. I cried. I called a breastfeeding girlfriend who would understand and I cried some more.
A couple days later Nate and I went through the process of figuring out how many ounces of milk I actual had to donate. I was confident that I had the minimum 200 ounces that I would need as a onetime donor, but I needed to know exactly how much I was sending to figure out how many boxes I would need to ship my milk. Also, I needed to know for myself. I was doing really well at holding it all together until I came to the bag from January 6th. I had written “Happy Birthday, Mommy!” on the bag. That just broke my heart.
For the record, I needed 2 boxes to ship my milk. I donated 574.5 ounces of breast milk. It is amazing that I was able to have that much milk to begin with and it is a miracle that I was able to give it to babies in need when my own baby wouldn’t drink it.
Step 4 – The milk bank sent me everything I needed to ship my milk. All I had to do was package it up, call FedEx to arrange for pick up and have the courage to actually follow through. The milk was sent priority overnight in a styrofoam cooler inside of a cardboard box. The milk stays frozen simply by being packaged well and shipped quickly!
Step 5 – These last two steps are purely optional, but for me they were just as important as steps 1-4. I took a lot of pictures. I knew that I would someday write this blog post and I would want some pictures for that, but I really took the pictures for me.
Step 6 – After everything was packaged, FedEx was called and the milk was ready to go… I got down on my knees, placed my hands on the boxes and prayed. I prayed for all those little babies who would receive my milk. I prayed for the families who struggled alongside the babies fighting for their lives. Most of all, I thanked God for blessing me with enough milk to feed my baby and the opportunity to feed others also.
Donating my breast milk that was affected by excess lipase was so healing for me. It has become one of the proudest accomplishments of my life.
Please feel free to leave any questions you may have in the comments section. In the near future I will be writing a post about the frequently asked questions of becoming a milk donor. I’ll answer questions like: Do milk banks sell the breast milk? And do milk banks really want excess lipase milk? You can also read my other posts about excess lipase: An Introduction, An Emotional Struggle & How to Scald Breast Milk
Want to learn more? Click here to check out my eBook!
Rebekah,
This is wonderful! How kind of you to share your story. The pictures are precious!!!
A gift to Moms everywhere,
Diane
I have had this issue with my first child. I now scald my milk before freezing- however, what if my son doesn’t take the scalded breast milk? Can it still be donated?
Yes, I think you can still find a milk bank that would accept the scalded milk, but be sure you disclose that when communicating with them.
Rebekah,
I didn’t realize how emotional I would get when reading your story. After watching you go through this whole ordeal it was so hard to read your story again. What a HUGE blessing to so many babies! It’s amazing how God can use something difficult and turn it into a blessing and gift for others! Thanks for sharing your story, hopefully it will encourage other moms to consider donating such a precious gift, even if it’s difficult.
You rock my world. You are my hero. The end.
Rebekah, I am choked up at how wonderful this is experience was for you. As a breastfeeding mother, I know how much of a bond you have with your milk – it may sound silly, but it is true. Thank you for sharing your story and may God bless you for your generosity and determination!
What a sweet way of telling this story – I loved it!
I just wanted to tell you that this post was really touching. I have been thinking about trying to donate some of my milk also. I have my deep freeze full and have been taking my milk over to my moms freezer now. I wasn’t sure how to go about starting this process. I was just sitting here watching Good Morning America and they were talking about the floods in Pakistan and they showed one mother who has a 1 year old daughter and she wouldn’t take her milk anymore. Probably because the mom isn’t eating right. They showed the baby in her arms and the baby was crying. I didn’t realize how emotional that sight would make me, but I think it really hits home with me now since I have been breastfeeding and I know I would be devestated if my son would not drink my milk anymore. Do you know if they do any international milk donating? Thank you for sharing your story!
Rebekah, it would be so awesome if you were able to give! It is an amazing gift and I don’t know if I would have been generous enough to do it on my own if I didn’t have my lipase problem.
The milk bank I used was sending milk to Haiti for awhile, but they have stopped. I don’t know of any regular international donations.
Rebekah-
This post made me cry. You are amazing and so strong. I love you.
Rebekah,
I can’t tell you how thankful I am for you and this post. I have 1600 ounces of milk in my deep freeze and just found out I have the same problem. My little boy, Caleb, is five months old and my goal was for him to get breast milk until he was one year without me having to pump or breast feed that long. After I weaned my breasts from producing so much milk, I figured out why my little boy wouldn’t eat. I thought it was because of teething, but I was wrong.
You’re right when you were talking about no one knowing anything about this issue. I called my pediatrician’s office and my lactation consultant and neither one seemed to know a whole lot, if anything, about this issue. I knew more than they did when I spoke to them and ended up being the one who was educating. So frustrating. All the money I spent on Medela breast storage bags, the cost of a brand new deep freeze to hold all of this milk, and not to mention the part-time job I had (literally about 20 hours a week) pumping for what I felt was for nothing.
I understand the anger, the hurt, the pain. I can’t describe it to anyone, you just have to experience it. I wanted my little boy to receive the benefits of my hard work, for him to have nutrition because of mommy’s love for him, for him to be connected to me in a way only a breastfeeding mother could understand. I held myself together really well today until I read your blog. I cried my eyes out. Finally! Someone really understands. I’m calling the North Carolina bank tomorrow (I live in Tennessee) to see about donating. I can’t stomach the thought of throwing this milk away.
Thank you. Thank you for sharing your story, for letting me know I’m not alone, for giving me hope, and for encouraging me that I’m not a failure. I don’t know you, but I’m so thankful for you. God bless.
Ahhh, Rachel! Now you have ME crying! I am so so SO sorry that you have to walk down this path. Please let me know if there are any questions that I may be able to help you with. I’m not an expert, but I’ve walked through it. Correction: I’m WALKING through it. I’m still nursing Grace, pumping, and scalding every day.
I hope that donating your milk can be as healing for you as it was for me. God bless.
Hi, I was recently offered milk for my 3 month old twins from a momma who has BM that has high lipase! The milk is from July and I’m wondering if it’s okay to give to my babies?
Thank you
Was it scalded before it was frozen? If not, it will probably taste bad. Some babies don’t mind the taste. Others will reject the milk.
That is so awesome! Year ago, before I’d heard of milk banks, I ended up throwing away several hundred ounces of frozen breast milk. 🙁 Then later, I nursed a foster/adopted baby and I was scrambling to try to GET banked milk for him until I could get some of my own in. It was cost prohibitive and so we ended up using formula with an SNS, and it worked but I wanted banked milk so bad. I love that you were able to do this!
Thank you so much, Dawn. I am extremely glad that I was able to donate. It really helped me in the healing process. Did you lose your frozen milk because of excess lipase issues?
No, I had started pumping ahead because I had so much milk, and I was also planning on going back to work, which I didn’t end up doing.
As a mama struggling to work parttime yet still fulltime nurse my 8-month old, I’m weeping at your struggle. I’m able to pump *exactly* what I need for the next day of childcare (family, not daycare, watch my daughter while I’m working), and I always feel stressed that I’m going to be short and need formula. Because of some other friends’ struggles, this issue is near and dear to me. Thank you for what you’re doing.
Thank you so much for your kind words, Erin. My hope is that others can benefit from my struggle. I felt so lost and ALONE in my excess lipase journey. I don’t want other moms to have to feel that way. Thanks again!
Thanks for posting your pictures! We are trying to get donor milk into the NICU where I work! Your hard work and dedication likely helped MANY severly ill babies! I hope that is a comfort! I would like to forward people to your site as an example of a typical donor mom if that is okay with you?
Christine, that would be just fine with me if you sent people to my site. Thank you for your encouragement. Donating that milk is one of the best things I’ve ever done.
I have just came across your blog tonight and WOW! This post might have changed my life! I have had excess Lipase in my milk with both my sons. My first son still drank my milk but my second son now refuses to drink it. I have stored over 700 oz of milk and to think of it going to waste killed me. But once I found your blog I have now sent out a email to my closest donation branch to see if I can start my donation process. If my baby cant use it I would love to have another child be able too. I never thought I could help another ones baby and it would be wonderful if I could. Thank you for all the information!
Leslie, you are the exact reason why I wrote about this! I am so glad you found my post before trashing all your milk. Donating 700 oz is an amazing thing that you should be very proud of. I hope it all works out for you.
Awesome story. It gives me a warm heart this morning knowing their are selfless people like you giving one of the greatest gifts to a child.
TEARS! I am in tears. I have excess lipase too. I also have a terrible time letting down with a pump so sometimes it can take me 30 minutes to pump two ounces. I also read your post about comparing this to a loss of money made and saved from overtime for a special trip. That hits the nail on the head to me. I’ve already wasted about 30 ounces of liquid gold which probably took me close to 10 hours to pump. It’s sickening. We kept thawing and checking my frozen milk before we understood what was going on. I hadn’t accepted that it was all going to be spoiled. I don’t have nearly the supply you did, but I’ll be looking into donating the rest. Luckily, I only work one day a week, so I have time to try to build up a new supply for cereal/sippy cup later on. My little one is 4 months now.
I am so happy for you that you found healing in donating the milk. I’ll be praying for you that this issue is resolved with your second child. This is my second child and we didn’t have any issue with the first (or he just drank it anyway). I appreciate your blog very much. No one I am close to is as dedicated to exclusively breastfeeding as I am, and therefore, can not come close to understanding why I haven’t started supplementing with formula with all these issues. My husband brings the baby to me at work to eat! Now that we know what is happening (we just figured it out in the past week or so) I can scald and hopefully move forward without him having to do that.
Again, thanks for the blog!
Christina, I am so glad you have some answers. I’m just sorry that you don’t have more breastfeeding support to help you through this. I have been EXTREMELY lucky to have some amazing breastfeeding moms as friends and role models. Keep going, mama! You can do this!!! Buy yourself a bottle warmer, scald your milk, and be PROUD of this amazing gift you are giving your baby.
Hi Rebekah, Thanks for sharing your experience with excess lipase. I was wondering if you had any photos of what your frozen breast milk looked like when thawed? You mentioned a bad smell, but did your milk also look different than your freshly expressed milk? I’m beginning to wonder whether I have excess lipase too. My fresh breast milk appears to be fine – no smell and I normally I can keep it in the fridge for at least 5 days with no issues. Anything older I’ve been freezing. My frozen breast milk (the oldest I have in the freezer is about 4 months old) after thawing in the fridge for about 24 hrs. then warming that in a container of hot water, has a lot of white particles floating in it and a layer of clear yellow at the top. It smells off though I wouldn’t say horrible, and I have tasted it as I wanted to be sure I wasn’t giving anything spoiled to my baby, and it doesn’t taste as good as the fresh milk – it has a strange aftertaste to it. My little one who is now 10 months old drinks it however (I guess the little guy is not picky.) I’m wondering how to figure out whether I actually have excess lipase? And if so, I guess if he’s drinking it, should I not worry about the smell and particles? Thanks for your advice!
Zoe, it sounds like your milk is probably fine. However, I would talk to a lactation consultant to be sure. The white particles is likely the fat in your milk that has separated. If you warm the milk and swish it around, that should go away.
Hmm…maybe I’m not warming it enough for it to dissolve, but it does have a different smell from the refrigerated milk. Thanks for your reply!
I love that you can donate still. I was hoping I could because I have the same problem. I have over 4000 oz in my deep freeze and still pumping over 90 oz a day. My daughter is just now refusing the frozen milk at 3 months so I have to only give her freshly pumped. I don’t love this feeling because it is just heart breaking to not be able to give it all to my baby but at least a baby will take it
4,000 oz in your freezer!?!?! Holy cow, mama! (Aw geez… no pun intended there!) That is just amazing. I certainly hope you can donate. Let me know how it goes!
I really am trying. I produce over 90 oz a day ad no since in it just sitting in the freezer when my daughter drinks fresh milk. The milk bank I want to donate to is non profit and usually waves the fee for NICU infants. I have 4000 over 3 months of pumping so I am sure by a year I will have enough to feed many NICU infants. I just really feel the need to help those that can’t help themselves. I hate seeing little ones struggle.
I’m so glad to read this! I’ve cried all day from just figuring this out after 135 days of pumping and freezing. I’m doing my test right now to see how long my milk stays good.
I cried many tears when I was figuring out my excess lipase problem too, Jenn. Good luck to you!
I also cried when I read your story. Thank you so much for sharing! For my first child I also had a lipase issue but only by the grace of God did my baby not mind at all! It smelled horrible and I was convinced the milk had gone bad, and strangely enough my baby still drank the previously frozen milk. I exclusively pumped for reasons not common, she had an extremely intense and hard suck, and would even suck my skin right through the nipple guard. Thankfully when I pumped I found I was an overproduced so 6 mos of pumping fed my daughter for a year. My second child was a great nurser so I pumped very little. Now that I’m pregnant again I want to pump some extra sessions so that I can have some for later. Worried about my extra lipase problem I scoured the Internet on how to solve this problem, but aft reading this I have come to believe if my baby doesnt take to the extra milk, then this is Gods way of showing me to donate! Thanks so much!!!! Such a blessing, so glad you shared!!!!
Kara, thank you so much for your comment. It is most likely that you will have lipase issues with your next baby, but I’m glad you are at peace about it. Milk donation is a wonderful thing.
Don’t forget that you can scald your milk also!
Keep me posted on your newest little one.
Hi, I just found your blog (and an answer to my soupy/sour tasting defrosted milk). My question is: why would milk banks want my “sour” milk. I kinda feel guilty for even considering donating it, because I don’t even want to feed it to my daughter, it tastes terrible! and how can I be sure that its lipase and not simply sour milk? My mild is ok in the fridge for up to 5 days, and for at least 3 weeks in the deep freezer. Anything older than one month is sour:( Thank you for all the info you posted, Im going to try scalding from now on.
Please do NOT feel guilty. Most of the milk collected by milk banks ends up going to NICU babies who are tube fed. The babies don’t even taste the milk. Plus your milk will be mixed with many other donations, so the bad taste will be diluted.
Of course you should talk to your milk bank about your milk to make sure that it is a lipase activity issue. If you are properly handling and storing your milk after pumping, then it is most likely excess lipase activity that is causing the bad taste.
I just realize why my 2 months old baby won’t take bottle when it was given to her from previously frozen milk because the milk smell different to her due to excess lipase. I have over 500 oz in the freezer and I don’t have the heart to throw them out and nervous about donating them. I don’t have the energy to go through the process.
I am frustrated with myself that all the breast milk I worked so hard to pumped can’t be used. So much effort putting into pumping and storing and now it is a waste.
Jessia, I hear ya. Really I do.
But it doesn’t have to be a “waste.” Donating your milk would be a wonderful gift to many, many babies in need. Donating my milk was really healing for me. Perhaps it could be for you too.
Thanks Rebekah – I have this same problem and have tried to donate to Helping Hands milk bank but they wont take excess lipase milk. So frustrating! Im going to reach out to my local Leche League to see where they recommend. Thanks for writing about your experience!
Mimi, you’ll want to donate to a HMBANA affiliate milk bank. They accept milk with lipase issues. I’m not sure who Helping Hands is affiliate with, but it might be a Prolacta bank. Prolacta doesn’t take milk with lipase issues, but the tricky thing is that not all banks advertise that they are affiliate with Prolacta.
I hope you are able to find a bank to donate to. Don’t forget that shipping your milk is an option!
Rebekah,
Reading all of your posts has really touched me so deeply, but this post right here has me all emotional and tears in my eyes. I just recently started back school, but other than that I am a stay at home mom. I have around 1000 ounces frozen so I have been thawing some out to give to my baby boy while I’m away from him at school, and I just have so much that I need to start using. I noticed the other day how weird it smelled, so like yourself, I tasted it and it did not taste like my fresh breastmilk! I thought maybe it was just that one bottle, but sadly it wasn’t. My baby took it at times then at times he wont take it and acts like he doesn’t like the taste. I haven’t tried again since I noticed he didn’t like it the last time. I started researching and to my surprise found out that I was one of the rare moms who had lipase. I was devastated and still am. I try not to think about it because it literally makes my stomach hurt. I wanted my baby to have my milk for as long as he could, and that is why I spend so much of my time pumping throughout the day. I have a good supply so I have been very fortunate to be able to pump so much and store it for the future. I am going to try again tomorrow to give him another bottle of my frozen milk, but honestly I feel bad for trying to give it to him because of how it smells and tastes. I know that I wouldn’t want to be fed something that was like that, but I don’t want all of it to go to waste and it saddens me that it might have to. I am definitely going to try the scalding method and see if that works for me. It seems like such a hassle, but it is amazing what you will do for your baby. I’m glad I came along your blog about lipase. Even though I am still heartbroken about it reading your posts has eased my sadness a little bit. Thank you so much for sharing your personal experience with lipase.
Karrly
Karrly, I feel for you. I really do. You should certainly look into donating your frozen milk. It will really help with your disappointment. Also, try using your newest milk from your freezer first. Some of that milk still might taste okay since the freezer slows down the lipase activity. I hope you will keep me posted on what you end up doing with your 1000 ounces.
I am just starting on this lipase journey. I too have quite a stock of milk already in the freezer. I am confused about how this milk would be suitable for a milk bank when it isn’t for my own child. How do they use it?
Adriane, the there is nothing wrong with the nutrition of your milk. The milk has a bad taste, but there is nothing else wrong with it. Some babies will still drink it, but picker babies often refuse.
A lot of donated milk goes to babies who are tube fed and they don’t taste the milk.
Thank you thank you for sharing this. I too suffer from this condition of lipase, spending hours wracking my brain and it’s very frustrating. With my 2nd I realized the issue. Im sorry to say I was wrongly informed by our lactation consultant that milk banks won’t take the frozen milk; I blame myself for not double checking. In the end we thawed and dumped 100 or more ounces. We had a good run and our baby would drink some of the milk until 10 months. I’ll try hmbana next time and continue to freeze.
Don’t beat yourself up about not donating the first time around. Unfortunately, many lactation and medical professionals don’t fully understand excess lipase activity. You might want to check out my eBook all about excess lipase activity. It will help answer any questions you have about it if you have another baby.
I just want to say that I came across this today as I was googling donating high lipase milk. I don’t know that I do have high lipase, sometimes my pumped milk seems to have a funny aftertaste (fortunately baby girl isn’t bothered by it). I love that you took pics, and LOVED that you prayed over it for those babies lucky enough to get your donation. I will be sure to do the same with my donation (passed everything, just waiting on shipping instructions!). God bless you and the little ones you helped, it is truly one of my proudest gestures as well!
Congrats on becoming a milk donor! How many ounces do you plan to donate? It really is such an amazing gift. Your family should be proud.
I was just about to start selling my milk to a lady; I’ve been pumping soo much lately and I just realized the older milk in my freezer tastes horrible! I’ve spent hours crying trying to figure out what to do.. Plus I felt awful for feeding that to my own baby!! I understand you can scald it so it doesn’t taste so bad, but it sounds like that gets rid of a lot of nutrients. Can I still sell the milk?? I was going to be this ladies sole source of milk and I don’t want her baby to lack nutrients or have nasty milk either. This is breaking my heart; what do I do??
As a mom of a preemie who required donor milk in his first days, I just wanted to say thank you to anyone who has donated. It really does make a difference! I think my 34-weeker only needed about 10 ounces before my supply came in (although it’s been a few years so I may be misremembering). 500+ ounces really does feed a lot of babies!
In addition, I have highly active lipase, which my son never minded. But heading into baby 2, and planning to return to work full-time after 12 weeks, I’m nervous about having to scald after pumping in my office, so I appreciate your tips. And I’m hoping to “pay it forward” by donating milk as well, so it was helpful to learn that they won’t turn away lipase-affected milk!
Peace and love to you and yours! Thanks again.
Thank you so much for your kind words. It is good to hear from someone who has benefited from donor milk. Blessings to you as you add to your family again.