When Food Makes Your Child Sick- Allergies and Parenting

By Heather Mackles, RN, BSN

When the food you’re feeding your child is making them sick, what do you do? One mother, a member of The Leaky Boob Community group admin team, shares her family’s journey with food allergies and how it has changed them. A registered nurse, the author shares some points for families on potential signs for allergies and how to proceed.

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It started with a crying baby, a “sensitivity” to my breastmilk, and a transition to soy formula under the direction of our pediatrician. Then it became vomiting, weight loss, and a hospitalization. Eight years later, we’re dealing with food anxiety, rebelling, and a struggle with autonomy. Somewhere in there was a major food overhaul.

Food allergies.

I am a parent of a child with multiple food allergies. We wield EpiPens, Benadryl and a rescue inhaler. We see a pediatrician, dermatologist and allergist every few months. We are one piece of candy away from a trip to the ER.

Food can kill my son.

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I was told while pregnant from a lactation consultant that babies rarely have an issue with actual breastmilk. Only babies with true milk protein allergies were unable to breastfeed due to the whey protein in breastmilk. My pediatrician agreed after we had several visits with complaints of horrible crying with no relief and constant diarrhea. He told me that my baby may have a sensitivity to my breastmilk and that it would be in my best interest to wean him immediately to soy formula. There was no mention of removing dairy from my diet first. Now knowing more than I did then, I probably could’ve tried removing all dairy from my diet and chances are strong that would have been a better option for my son. For more on breastfeeding a child with food sensitivities or food allergies, see this post here.

But I didn’t know then what I know now. I didn’t know how to fight and advocate for my son.

When we first got the diagnosis from the gastroenterologist, I made that first trip to Whole Foods. I was beside myself. I didn’t know what I was looking for. Then this saint of an employee came up to me, and asked if he could help me find something. I poured my heart out to him while he helped me navigate the store.

My child, who loved homemade fettuccine Alfredo (which starts with a stick of butter and a pint of heavy cream), now could not have anything that had the milk protein, casein, in it. It’s not a lactose-intolerance. He can’t just drink lactose-free milk and be fine. He can’t have any animal milks, butter, cheeses or whey protein. His reactions continued going up until his diagnosis had only been gut and skin related, but that doesn’t mean that the next exposure couldn’t affect his respiratory system.

The threat is very real.

My son can’t eat or have contact with:

  • Dairy
  • Gluten
  • Tree Nuts
  • Peanuts
  • Tomato anything
  • Nitrates
  • Fluoride
  • MSG
  • Artificial Colors
  • Preservatives

We now have to read every ingredient list for EVERYTHING. When he’s prescribed a medicine, or even if I go to give him over-the-counter medicine, I have to call the manufacturer and get the all clear that it does not contain dairy or gluten. Sometimes the manufacturer is closed, or won’t return my calls for days, but he needs the medication at that moment. So I have to take a deep breath, weigh the risks and benefits, pray, and give him the medicine. His allergy medicine prescribed by his allergist? I gave it to him for a month and couldn’t figure out why he was breaking out in hives and having diarrhea. It contained gluten as a main ingredient. Because his vitamins were cultured in milk, but they didn’t list it because they don’t contain milk, he had a reaction. Now he’s taking vegan vitamins to be sure they are dairy free. His allergies have evolved over the years, though he has yet to grow out of any, as many kids with one food allergy usually become allergic to other foods over time.

Every single thing that goes into my child’s mouth requires me to check the ingredient lists. Unfortunately, if something in it is milk-derived, it doesn’t have to list that according to the FDA. There’s a lot of ambiguity when it comes to artificial and natural flavors, colors and preservatives, and transparency is not required. So do I give him the food that should be okay and risk a reaction, or do I disappoint him and tell him it’s not safe? We play that game. Every. Single. Day.

Sometimes I hear him coughing in his room at night, one of his common early symptoms of a reaction, and the panic starts rising. “What did he eat today? Was it anything that we ate differently? Have I looked at our safe foods’ ingredient lists recently? Did they change their ingredients?” And then I mentally go back through everything he ate in the past 24 hours, because reactions can be delayed. His are usually around 8 hours after ingestion. Sometimes it could be anything, sometimes I may not even know for sure what he has eaten.

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I cringe when other kids offer him food because he SO BADLY wants to take it, but he does good most days on refusing. Sometimes he slips, but I have to give him some autonomy. I cannot keep him in a bubble forever. He has had to learn how to resist temptation in the most evil of ways. Food is more than eating. It’s a social and cultural enjoyment. Good food brings people together and celebrations often center around food. Many people take offense even, including family members, when we say that he can’t have whatever they’re offering, because we aren’t sure of the ingredients.

My son experiences discrimination every time he’s on some sort of a team or in a group activity. I’ve heard such things as “We don’t accommodate for people with food allergies.” and “Can’t you just bring him his own snack to every game?” told to me by other parents, teachers, and team leaders. But there’s always that one parent on the team that texts me to ask me for suggestions on my son’s safe foods because they want to make sure he feels included. One parent who shows they care. They are the shining beacon of light, and by being able to share in team snack with everyone else, just like every other kid, you made his day. It warms my heart to see him so happy. And it makes me so angry when people blow off his food allergies like they’re nothing.

My child’s food allergies aren’t a preference, they are a life and death risk. I know it is inconvenient, my family lives with and accommodates those inconvenient risks every day.

Our safe restaurants include Mellow Mushroom and Disney restaurants. That’s about it. Going out to eat is another adventure. It takes a lot of time and energy, because we have to call ahead and make sure they can make something for my son that he can actually eat. He’s not picky by any means, but he does have his preferences, and most places either have 1-2 things on the menu he can have, or none at all. Like most of us, he wants to enjoy eating beyond considering whether or not it will make him sick. Most times, the restaurant’s employee we talk to on the phone can’t guarantee that they’ll have a meal free of his allergens. By the time we call around to 3-4 places we’ve selectively picked, we usually throw in the towel and make something at home. We make 95% of our food at home from the most basic ingredients. It takes too much time, planning and effort to go to a new restaurant, where most of the time, the employees are very poorly educated on food allergies and cross contamination. Fast food is mostly out of the question. We don’t even try there. If we need fast food, we make him a safe option at home.

Do I want to be this controlling? HELL NO. I want to let him eat whatever he wants, and I would cut off my left arm if he could just have one slice of birthday cake at another kid’s birthday party. But his diagnosis requires vigilance and I must provide that.

Still, I refuse to allow food to define my child. He is a smart, funny, easy-going kid. He’s never met a stranger and will hold a conversation with anyone he meets. He is good at acrobatics, circus aerial arts, and baseball. He just signed a modeling contract through a worldwide agency. His smile is infectious and that lights up the room. Food allergies are NOT who he is. He may have them, but they are not him. He is Ian, a boy who has food allergies.

And I stand in the background, ensuring he stays safe as he blossoms into his own person.

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Right now, we take it one day at a time and we learn and grow with him. There will be more rebellion. There will most likely be more ER visits in the future. There will be times where he chooses to not bring his EpiPens with him because it’s not cool to have special needs. Hopefully that day, he won’t need it, as most days he won’t. Hopefully he won’t learn this lesson the hard way. But there will also be good friends that we meet along the way, and we will cherish them forever.

I went on to successfully breastfeed two more children. My middle child was breastfed until 18 months old, and my youngest is 19 months old and still breastfeeding with no end in sight. We introduced the top eight most allergenic foods at 6 months old under the direction of our (new) pediatrician and both of my youngest kids have no food allergies.

There’s a lot I wish I knew back in the day with my son that I know now. For new parents it can be overwhelming and scary. Most of the time I’m not scared any more, just vigilent. And I’m able to share what I’ve learned. There are boundaries to learn, together we can figure them out. In this post, another parent shares a few methods about food boundaries with her food sensitive child. 

Want to know what to look for and what could be a warning sign of an allergy in your child? Here are some of the most common things to look for when evaluating for food allergies in children:

  •      Rash around the mouth
  •      Flushed face
  •      Hives
  •      Vomiting and/or diarrhea
  •      Behavioral changes, mostly severe anxiety or restlessness after eating
  •      Fast heartbeat*
  •      Face, tongue or lip swelling*
  •      Constant coughing or wheezing*
  •      Difficulty breathing*
  •      Loss of consciousness*
*If your child exhibits any of these symptoms, call 911 immediately as these are signs of a life threatening medical emergency.

They could encounter the allergen once and react to it, or they could’ve been exposed to the allergen 100 times before and all of a sudden start reacting to it. There is no telling when or how bad they’re going to react to the allergen, if their body chooses to react to that particular food protein.

Many life-threatening food allergy reactions (called anaphylaxis) happen to kids who did not know they had a food allergy. If you suspect that your child has a food allergy, please consult your physician for further allergy testing. 

If you’d like to learn more about food allergies, please visit: www.foodallergy.org.

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Living with the reality that the very nourishment that should sustain us, bring us joy, and lead to health could make our child sick, endangering their lives, isn’t easy. If you get to enjoy life without these scary obstacles, please be patient with those of us who must learn how to navigate them. If you are just discovering that allergies may be a part of your child’s life, you’ve got this. It may require a lifestyle change but you’ve got this. With community and information sharing you can be your child’s strongest advocate and learn how to navigate this terrain without it stealing your joy. 

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Heather Mackles is a 32-year-old retired PICU RN, who is happily married to her husband, and stays at home with her three children, two dogs and an antisocial cat. In her minuscule amounts of free time, between changing diapers and homeschooling/unschooling her kids, she enjoys traveling, taking frequent trips to Disney, sewing, and critiquing medical TV shows. She believes in advocating for all women from all walks of life, and loves helping women achieve their breastfeeding goals.

#MyStoryMatters; Breast Cancer

by Ashley Thompson

Ashley Thompson- headshot

Nursing wasn’t easy for me but I knew it was what I wanted for me and my daughter. I’m 32 years old and my daughter was born almost 2 years ago. I’m so fortunate that I have been able to stay home with her full time since she was born. When she came to this world, I went ALL IN! I nursed exclusively on demand, I gave up dairy, and I very comfortably nursed anywhere I was. I loved nursing and so did my daughter!

Around April of this year something changed. I was feeling like maybe it was time to wean, and ultimately made it happen. Three weeks later, during a self exam, I felt a lump. I first called my OBGYN, and then a breast surgeon (I have a strong family history, and have seen one since I was 27). Neither had any sense of urgency, and were quick to dismiss me as I had just stopped nursing. I was told that breasts of a nursing mother are too lumpy, and milk would distort imaging. But I knew something was wrong. My mother, 2x breast cancer survivor, made one phone call to her doc and I was in the next day.

Four days before Mother’s Day, I got the call. One month later I had bilateral mastectomies. Six weeks after that, CHEMO. Breast cancer does not discriminate! I can’t tell you how many incredible young survivors I have met through this journey. What you said really hit home with me. Enough soup cans with pretty pink ribbons, and No Bra Day? Women don’t need to see beautiful models showing their brastraps in support of awareness.  Real, raw stories are what they need.

Ashley Thompson, breast cancer, guest post, Leaky to Leaky

 

Anyway… I’m done with chemo and now cancer free! I’m still in the process of reconstruction and I will likely be treating/preventing this the rest of my life, but it will be a long life! I am still mourning the life, and the body I had before, but am so grateful for the future! Children are so resilient and my daughter has been so amazing through it all! I miss nursing, and I hate that I will never nurse again.  Although my breasts are gone, nothing can take those memories away. Not even cancer!

Adoption and Breastfeeding – A #MyStoryMatters

by Meaghan McKracken

It could be said that my adoption story centered around breastmilk. A reality most wouldn’t expect in an adoption story but adoption stories, like all stories, are unique in their own right. This is mine.

If you’re on this site you probably already know that the realities of breastfeeding can be difficult. For many women, concerns about sufficient supply, struggles with engorgement, clogged ducts, cracked nipples, and more can turn what may be natural into what feels like an entirely foreign experience. An experience further complicated when almost exclusively pumping, grief of separation, and a new but essential relationship with adoptive parents. As a birthmom, I was concerned that I wouldn’t be set up for success. In reality, feeding my little boy naturally became the success of my adoption. 

Allow me to explain.

Open adoption is still adapting; still evolving. What it looks like today is vastly different from how it was even 10 years ago. Still, there are holes in the process because when you’re dealing with complicated human emotions and trying circumstances, finding a balance is an ever shifting and unique challenge. Stress, anxiety, and doubt from both birth mothers and adoptive parents are a reality of the journey. But there is also joy; so much joy. 

Meaghan and her baby

Breastfeeding became my test. Incorporating a breastfeeding plan would mean a very gentle transition for the baby and myself. There would be no sharp and severed moment of goodbye. Everything would be slowed down and transition of care would be tapered. I felt this would reduce huge amounts of stress and trauma for my little one and myself. If I could find a couple who was cooperative and willing to take an inclusive approach in involving me in the care of our child, allowing my milk for feedings I felt it would be better for all of us. Such an arrangement would fulfill my desire for real openness between our two families. If they valued nourishing my son through human milk, specifically the milk that was intended for him, I could trust them to put his health first in the future no matter what their anxieties. It was the perfect and natural way to unite us, just as it is the perfect and natural way to unite moms and babies.

My adoption agency shared my specific birth plan with their hundred plus adoptive couples, and over half replied with a very strong yes. When I finally picked my adoptive couple I was blown away by the level of inclusion they were prepared for. Working for my son’s health became a common cause for us to focus on together. A truly baby focused adoption. 

Rowan was born September 28th, weighing 6.8lbs and just 7 weeks later, he already almost weighed 10lbs. I nursed and pumped a bit in the hospital after the pregnancy. The adoptive mother used SNS (supplemental nursing system/at the breast with supplemental nursing system) with my milk so she could also have the experience of nursing and bonding, reducing nipple confusion. Once again I felt supported and valued in a practical way that was good for my son. I stayed with them after my hospital stay to establish my milk supply and to pump milk for them to get storage going for them.

Meaghan's adoptive parents

It was so fulfilling to see them build their family, to share in the happy side of adoption, and to feel accepted as an advocate for my child’s well being. I had a very primal and protective instinct to nurture and care for this sweet little one that was not only met but encouraged. It was simply love without ownership or possessiveness. And truly, what was there to fear? Bonding? Affection? Why would we want to protect our children from experiences like these?

I signed the papers a little over a week after giving birth feeling fully confident I would see my son soon. That all of us were on the same page about what story we were writing for our family. So far it has been a joy and an adventure; the most beautiful work I’ve done in my life. 

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What do you think of breastfeeding and adoption? 

Do you have any experience with breastfeeding and adoption?

Share in the comments below your thoughts on adoption and breastfeeding.

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If you are a birthmom or know a birthmom looking for support or a community, On Your feet Foundation is an excellent resource. They have retreats, case management and an amazingly supportive community just for birthmoms.

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If you’d like to share your story with a larger audience, submit your story, photos, and your bio, with #MyStoryMatters in the subject to content @ theleakyboob.com (no spaces).

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Meaghan's headshot
Meaghan McKracken is a 32 year old mother of two. She lives in the Pacific Northwest with her husband and three year old. The adoptive couple of her youngest son also lives close by and they see each other on a weekly basis. Meaghan is a massage therapist as well as currently developing her skills as a Pilates instructor.

A Poem on Postpartum Depression; A #MyStoryMatters

by Melissa Hoos

depression and motherhood

I’m mama to one amazing 10 month old boy. Having been diagnosed with clinical depression and generalized anxiety disorder at age 15, I knew I was at a high risk for postpartum depression. Pregnancy gave me a wonderful break from depressive episodes (my psychiatrist would tell me, just get pregnant! It’ll solve all your mental health issues!), but after my son was born, the relief didn’t last long. The hormonal high lasted a few short, awesome days, and then the baby blues set in. My husband went back to work, and I spent that day’s midwife appointment sobbing on her couch – partly because I just couldn’t stop crying, ever, but also because she said the words I was hoping to never hear her say: I think you need to consider going back on medication.

I’d worked SO hard to get off the medication so I could get pregnant, and I wouldn’t be able to breastfeed if I took the same medication again. So I was determined to overcome PPD/PPA without it. My husband took some more time off work, we made a plan, and my mom came to help for a while. It worked, for a few weeks, until it didn’t anymore. 

I knew I loved my son. I knew I could take good care of him. But I couldn’t shake the feeling that I was just not good enough to be a mother, and he would be better off without me. He wasn’t a colicky baby, and it wasn’t very often that he just cried and cried. My inner monologue often went along the lines of “what kind of mother gets angry at her baby? He’s just tired/hungry/wet and now I’ve made him scared too!” 

No matter how calm and rational I made my thoughts, I just could not translate that into calm and rational actions. It was like being stuck inside my own head, watching someone else pick up my baby with rough hands, hearing someone else say to my baby “what the f*ck do you WANT??” And then the next instant it was me again, sobbing and hating myself because how could I have lost it again? Nursing him after those awful moments was just as much an emotional reset for me as it was for him.

One night as I laid in bed crying, watching my baby in his bed after over an hour of fighting to get him to sleep, I wrote this poem. The first sign of a depressive episode for me has always been the loss of my creative side. I normally love to write, and I decided that despite the fact that I did NOT want to, I needed to. Even if it’s only to unscramble my brain so I could sleep. I let my husband read it in the morning, and I think it was the first time he truly understood how I felt. 

I don’t know exactly what snapped me out of that awful episode. It had been months. I knew the whole time that I should probably stop trying to muscle my way through and just take the damn medication. And then one day, I realized it had been a few days since I last felt out of control. I think, for me, the worst part was the anxiety. I was suddenly able to say to myself, “Hey, if he wakes up, it’ll be okay. I’ll just nurse him back to sleep.” Or, “Hey, if I can’t get him back to sleep, hubby will take a turn and I’ll go get a glass of water.” I started being able to recognize the start of a “bad brain day” and could take self-care measures to prevent another episode from beginning, just like before I was ever pregnant. The cognitive behaviour therapy, anxiety classes, and counselling started coming back to me.

It’s not completely gone now. And since depression and anxiety has been a part of my life for well over a decade, I doubt it ever will be. I don’t know what the next postpartum experience will hold, but I’m writing down ways to cope so that next time, maybe I can bypass a little more of the darkness. Ignoring it just doesn’t work, so I hope that shining a little light on the topic can help someone recognize PPD/PPA in themselves or someone they love, and get the help they need. 

This is my poem

When he’s screaming I can’t 
think and everything starts to look 
red and I just want to
scream right along with 
him, this baby I waited so
long for and asked
God for and 
thank
God
for

Where does my heart 
go when I’m so
angry because it isn’t 
here loving my
son, it is somewhere else and I just
can’t quite reach it

My brain tricks me into
thinking how dare he cry, but he’s just a 
baby and he’s telling me momma I 
need you which these ears fail to
hear with all the 
screaming

I just want to be a good
mother but all I seem to do is 
lose my mind and this isn’t 
me, it isn’t 
me, someone please 
help
me

In the dead of night I watch my baby
sleep in his crib and 
wonder if he will remember the
angry momma or the loving one and the
thought breaks my 
heart because what if he
remembers the
angry one?

He is a piece of me and I
love him fiercely but 
he deserves 
better than
me

God help me

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For more information about postpartum depression visit Postpartum Progress.

  If you’re seeking for advice and guidance, here’s an article on postpartum depression and anxiety.

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If you’d like to share your story with a larger audience, submit your story, photos, and your bio, with #MyStoryMatters in the subject to content @ theleakyboob.com (no spaces).

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Melissa Hoos

I’m mama to one amazing 10 month old boy. Having been diagnosed with clinical depression and generalized anxiety disorder at age 15, I knew I was at a high risk for postpartum depression. 

Pumping And Grief In Adoption – A #MyStoryMatters

by April

To have swollen breasts filled with milk, and no baby to feed is painful, more so in the soul. The loss is magnified when the milk starts to come in, and you are faced with empty arms. Your body won’t let you forget and move on. Your body remembers. The right decision to be made isn’t always the easy one. Sometimes the right decision is difficult. I decided I wouldn’t fight my body.

I asked the adoptive parents if I could pump for them. They may not know this, but the fact they said yes helped me move forward. It gave me a renewed sense of purpose. One would think that pumping would increase the grieving process. In fact, it did the opposite.

Deciding to pump was healing for me as much as is helped the son I placed. I thought perhaps it would be hard to pump. But I loved my son so much I wanted to give him every advantage. I couldn’t give him much. What I could give him was milk. The research has shown the advantages of breast milk over formula. Due to his premature birth, it was needed even more. I decided to set aside my own pain and pump for his parents.

I placed a picture of him on the pump and the first few times, I wept. I think this was healing and cathartic. It started to hurt less and I started to feel that my self-worth wasn’t tied to my past and the only thing I was good for was being a baby carrier for 8 months. I was starting to look at my present and future. The baby I no longer had was being nourished with the milk I was able to provide with the love of his adoptive mother. I had an intermediary deliver the milk. Despite the fact my psyche was slowly healing, emotions were still raw. Seeing the son I placed regularly was not something I needed at that time. Knowing he was being given my breast milk was enough to start closing the mental wounds. It was enough to know he was given the very best nutrition despite being a few miles from me.

April image

My own nutrition and exercise regimen improved. Women already are faced with horrendous body image issues. Multiply that 10 fold after having a baby, and no baby to show for it. Pumping helped me lose the baby weight, eat right after my pregnancy (again, taking care of myself post adoption), which trickled into other areas of my life and become strong in the gym and out of the gym. I was able to face the world with a renewed sense of purpose.

Even though the baby I carried was gone from my arms, he wasn’t just a faint memory. He was real. I had to face it head on while pumping and that made me determined to be as healthy as I could post pregnancy. I did my best during pregnancy while battling hyperemesis gravidarium. Life didn’t end after the baby was delivered. This is so important to remember as birthmother. Life goes on. I had to go on too. Pumping milk reminded me of that, whenever I felt as if there was no future for me. Many people may feel that pumping was a selfless act. If anything, it was also selfish, in a very good way. It was part of my self-care.

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What do you think of breastfeeding and adoption? 

Do you have any experience with breastfeeding and adoption?

Share in the comments below your thoughts on adoption and breastfeeding.

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If you are a birthmom or know a birthmom looking for support or a community, On Your feet Foundation is an excellent resource. They have retreats, case management and an amazingly supportive community just for birthmoms.

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If you’d like to share your story with a larger audience, submit your story, photos, and your bio, with #MyStoryMatters in the subject to content @ theleakyboob.com (no spaces).

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April headshotApril lives in Chicago, IL with her son and and four pet rats! Post adoption she realized that being strong mentally and physically was important to her well being. She now works as a personal trainer teaching women to strive for more and be more. One of he goals is to combat the bodyshamng that is rampant in print and social media. She loves teaching women to shift focus from looks and the scale and INSTEAD, embrace their strength – whether it’s deadlifting their own bodyweight, swinging a kettlebell for 10 minutes without stopping, or doing their first pullup.

 

#MyStoryMatters: Adoption ≠ A Better Life, Just A Different One

by Alyssa Ruben

Nobody prepares you for the grief you feel when you sign those relinquishment papers and forever become what society deems a “birthmom”. Nobody prepares you for the reality of your child’s adoptive parents closing what was promised to be an open adoption. 15 years ago, I gave up my oldest child for adoption. Everyday since that day has been a test of my strength because every day I feel weak. A test to my willingness to keep living, because there were many days in the beginning that I had wanted or tried to kill myself from the soul shattering grief that I live with everyday. 

Coercion in the domestic infant adoption industry is real. They feed on the love that mothers have for their children. They look you in the eyes and make you believe that your baby is better off with strangers. Young impressionable women, told over and over again how much better off their baby would be without them. How more money, 2 parents, a college fund, big house, older more established parents equals a better life. 

I was 17 when I discovered I was pregnant, and much to far along to have an abortion. It was a child by that point, in every sense of the word. Both legally, emotionally, and psychologically. I was homeless, bouncing from one friends couch to another. Unsure of where my next meal was coming from, let alone how I was going to keep a baby. Nobody offered solutions. Nobody offered alternatives. Nobody showed me the resources available to me to keep my baby. The family I ended up living with for the majority of the remainder of my pregnancy told me in no uncertain terms that if I choose to keep my baby I would be out on the street. They also didn’t offer my poor naive teenager self any alternatives or resources to help me make an informed choice. Just adoption. Only adoption. 

I distanced myself during the pregnancy. I told myself I was a surrogate carrying someone else’s baby, that he wasn’t mine. That he was never meant for me. I repeated all the crap the adoption agency told me in my head over and over again trying to convince myself that this was the right choice….and for many years it worked. I believed those words. Until I stopped drinking the “Kool-Aid”. Until I took a real look through open eyes at what I had done. What had been done to me, and what I had done to my child. I died the day I signed those relinquishment papers, forever severing my rights to my child. The girl I once was…is gone. She won’t ever come back. The child he should have been is gone too. He will never be who he should have been. I live everyday with a giant piece of my soul missing. Nothing will ever fill that, even with reunion.

I would love to say that promises were kept and my open adoption stayed open. It didn’t. Once they got what they wanted, they closed the adoption. They ran for the hills and never looked back, except for when they wanted to blame my genetics for problems that he has. Never once stopping to consider that it was because he was an adoptee that these problems exist in the first place. 

Holidays are hard, his birthday is even harder. Watching my kids that I’ve raised mourn the loss of their brother that they should have had is gut wrenching. Not being able to ease their pain, because I can’t even ease mine, is soul shattering. Adoption doesn’t just affect the natural parents. It affects everyone. It affects the aunts, the uncles, the grandparents, the raised children and the spouses. His life is not better because I gave him up. And my life is not better because I gave him up. Adoption doesn’t equal a better life. Just a different one. 

There is so much more I could write, and maybe one day I will. But I’ll leave you with this. If you are considering adoption please remember these words. Your situation is temporary. Adoption…adoption is forever. 

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If you are a birthmom or know a birthmom looking for support or a community, On Your feet Foundation is an excellent resource. They have retreats, case management and an amazingly supportive community just for birthmoms.

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If you’d like to share your story with a larger audience, submit your story, photos, and your bio, with #MyStoryMatters in the subject to content @ theleakyboob.com (no spaces).

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Alyssa Ruben is a 33 year old doula, CPST-IC, student midwife, placenta encapsulation specialist and stay at home mother to 5 children. 4 that she is raising. She’s an advocate for national midwifery licensure, domestic infant adoption reform and passionate about car seat safety. When she’s not acting as chauffeur, personal chef and official boo boo kisser she enjoys reading, volunteering, and serving and holding space for laboring and pregnant women. She currently resides in Southern Wisconsin with her husband of 14 years and 4 children and one very fat cat. You can follow her on Instagram @squishymommy1.

The Pumping Birthmom: Pumping for the Baby I Didn’t Take Home- Talia’s Story #MyStoryMatters

by Talia

Talia, guest post, leaky to leaky, open adoption

My son Yeshua was almost two when I realized I was pregnant again. But this time instead of tears of joy I cried tears of fear and disbelief. It wasn’t the right time. I called Journeys of the Heart and this is where my adoption process began.

I had never even heard open adoption before but Beth, my adoption counselor at Journeys had me convinced that it would be the best situation for me and the baby, so I was immediately on board. I found a nice couple that already had three boys and things moved forward fast. We had visits, Yeshua started playing with their kids, and Nikki (the adoptive-mom-to-be) even came to ultrasounds with me. We would have lunch and write deep sounding lovey fluffy emails to each other expressing our feelings about this crazy open adoption process we had entered together. Everything seemed perfect…until I was 36 weeks.

Now I’m a breastfeeding fanatic. Yeshua hadn’t had a drop of formula and I pumped at work for him like a dairy cow. I’m all the way crunchy. I even put my breast milk in my own ear when I got a sinus infection (I would have put it in my son’s ear too if he ever had one! But he never did, because he was breastfed). With all that being said, I was determined to pump and send milk to the adoptive family after this new baby was born as well. Even though I knew Zachary wouldn’t be coming home with me, I still wanted to give him the gift only his birthmother could give: breast milk a.k.a. liquid gold.

At 36 weeks it was time to sit down and make a “contract” that would set expectations or guidelines for how our open adoption relationship would play out once Zachary was born. I considered my expectations to be quite low, but one of them included sending milk that I had pumped. I never imagined in a million years that someone would turn down liquid gold for her newborn child. This couple refused. They gave no explanation for why, but they simply stated that they “preferred not to take it.” So I said, “Well they prefer not to have my child then.” Beth and I were onto a search for a new family that was right for me.

I fell in love with a parent profile that I had overlooked earlier with a couple named Robin and Jeff in it. Before I met them though, I asked Beth to call them to ask them their feelings about me pumping milk and sending it to them. Not only were they ecstatic about the idea, they actually already had a freezer full of frozen breast milk waiting for them from a friend whose toddler would no longer drink it. It was truly meant to be. We met and three weeks later I gave birth to Zachary Isaiah.

I was afraid to latch him to my breast. I was afraid to fall even deeper in love than I already was and I knew that many promised adoptions were ripped to shreds once the baby latched and the birthmother changed her mind. But I also knew I would regret it for the rest of my life if I didn’t have those holy sacred moments with my perfect 6 pound newborn baby.

guest post, leaky to leaky, tail's open adoption story

I was sad and afraid that it was breaking Robin’s heart to watch me nurse the son she would take home the next day without being able to feed the same way, but she supported me and made me feel loved. I secretly asked her to forgive me in my mind. Leaving the hospital the next day without Zachary was the hardest moment of my life. I mourned the loss of a living baby which is so strange and distinct, but what was even stranger was that I was able to go home and start making milk for him right away, just as if he was right in my arms. A month after that I moved 5 hours away but that didn’t stop me; I kept pumping and froze the milk. In the meantime Robin’s friend with the freezer milk spent a small fortune mailing the milk over dry ice and between the two of us Zachary was an adopted baby that drank breast milk exclusively for the first 6 weeks of his life. I pumped for about three months but eventually I got a full time job and the supply was less and less. I lamented deeply as it all diminished.

I was able to visit with Zachary and his parents several times within his first few weeks of his life. The hardest part of those visits were holding my baby and smelling him and my body’s natural response was for my milk ducts to let down and say, “hey lady, it’s time to feed your baby.” I longed so badly to nurse him when I visited at their house, but I knew to request something so absurd would be crossing the line and I would never want to make Robin and Jeff uncomfortable because we had a beautiful open adoption. So instead of nursing him I went home and pumped and labeled the milk baggies “I love you Zachary.”

birth mom breastfeeding adoptive baby

Two years later Robin shared with me that because of our unique situation, Journeys Of The Heart had created new guidelines for new incoming adoptive parents. Now they tell adoptive parents that if the mother wishes to pump it is “highly recommended” to accept it. I felt honored by that change and hope to be an inspiration for birthmothers in the future to be encouraged to give a beautiful gift of milk that only they can give.

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What do you think of breastfeeding and adoption? 

Do you have any experience with breastfeeding and adoption?

Share in the comments below your thoughts on adoption and breastfeeding.

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If you are a birthmom or know a birthmom looking for support or a community, On Your feet Foundation is an excellent resource. They have retreats, case management and an amazingly supportive community just for birthmoms.

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If you’d like to share your story with a larger audience, submit your story, photos, and your bio, with #MyStoryMatters in the subject to content @ theleakyboob.com (no spaces).

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guest post, leaky to leaky, Talia's open adoption story 
Talia lives in southern Illinois with her fiance and son.  After having an intense all natural birth with her birthson Zachary, she realized her dream is to be a midwife and help other women empower themselves through having the birth of their dreams as well.  She currently works as an OB RN and prenatal massage therapist, with plans in the near future to start midwifery school.
 

The Forest of Grief- How To Support Someone Through The Loss of Their Child- Mighty Gabriel

By Nicole Keesecker Plourde
This post made possible by the generous support of CatBird Baby Carriers.
Note from the editor: When Nicole and Beth shared the story of Mighty Gabriel with us we knew it was a story we wanted to help share. When they talked about how they walked with their friends through their grief, we knew the lessons they learned were ones we wanted to pass on. Mourning the loss of a child is difficult beyond words, being the friend of someone going through such pain often feels like a hopeless situation. These practical suggestions for how to love and support someone we care for in the midst of the greatest pain of their lives won’t eliminate their suffering but it can help them know they are not alone. If you are grieving the loss of a child, please know that we are here for you, TLB and the wonderful moms running CatBird Baby are ready to support and care for you, our hearts ache for you with the loss you have endured. You are not alone. ~Jessica 

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Being the friend of someone who is grieving the loss of a child, be it through pregnancy loss or after their child was born, can be an overwhelming position to be in. How do we care? How do we support? How in the world do we appropriately honor their grief without causing them more pain? Is that even possible? While I don’t have all the answers and I’m learning myself, I wanted to share these 5 points with you:

  1. Be there. No really, show up. With food or a mop to clean their bathroom, whatever it is, they’ve already lost so much, they shouldn’t lose friends too. 
  2. Stick around. Our lives are busy and our attention spans short. We will move on to the next thing—they will not. Continue to reach out to your friend even after the initial event has passed. Grief never really stops; it is carried. They will need you three months from now, three years from now and three decades from now.
  3. Say their child’s name. Mentioning their loved one will not make your friend more sad than they already feel. That’s not possible. It tells them that their child has not been forgotten.
  4. Follow their lead. Some days will be better than others. The grief is theirs and not yours. Let them do things their way and be there to support them.
  5. Blanket them with your love. Listen and be honest. Hug more and talk less (I need to work on this one). Then love some more.

I wish I didn’t have to write any of this, but I do. Gabriel taught me that walking through the forest of grief is never something any of us should have to do alone. Here is his story.

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Mighty Gabriel’s Forest

October is National Pregnancy and Infant Loss Awareness Month, and this year tragedy hit a little too close to home. The Catbird Baby carrier I gifted to my friends and fellow parents would never be used. Their beautiful baby boy, Gabriel Anthony Allen, was born on June 24, 2015 and passed peacefully in their arms just 64 days later. No parent should have to go through what they have. And at Catbird Baby we want to honor baby Gabriel and bring awareness to the disease that took him from us. We want to share his family’s story to bring people together, to find a cure, to let everyone who has lost a child know that they are not alone.

Gabriel had Spinal Muscular Atrophy (SMA). Even his mother, a family physician, hadn’t heard of it. SMA is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants. SMA is an autosomal recessive genetic disorder. This means that, generally, both parents must pass on a faulty gene for the child to have SMA. There are four different types of SMA. SMA type I—the kind Gabriel had—is the most severe and also the most common. Babies with type I usually face greater physical challenges than individuals with other types of SMA. The expected lifespan of a child with SMA type I can vary dramatically based on many factors.

There were no warning signs. An induced, unmedicated birth followed a healthy and happy pregnancy. Gabriel had good APGAR scores and passed all of the screening tests. He nursed like a pro just minutes after birth. Then the nurses noticed that he was a little “floppy.” Low muscle tone in very young infants is often the first sign of SMA type 1. He stayed in the hospital for observation and more tests. Everything came back normal. They took Gabriel home.

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They enjoyed time together as a family. Big sister, Eleanor, jockeyed for space on her mama’s lap and at the breast. Although a bit tricky at times, everyone got what they needed. All was right with the world.

Then one day he had an episode of blue lips while nursing and that night he was struggling with his latch. After a visit to the doctor everything seemed okay. But, a few days later, Gabriel was working hard to breathe and his whole face turned gray. A trip to the ER, followed by helicopter ride to the Children’s Hospital ended with a stay in the PICU. After a couple days he was too tired to nurse. He wouldn’t even take a bottle nipple. He needed help breathing, so his mama started pumping day and night so that he could receive her nourishment from a feeding tube.

At four weeks old Gabriel was diagnosed with SMA. As his respiratory system as struggling, his brain was developing. He wanted to play, like any other baby. He was fussy and hated to poop, just like any other baby. He was loved and adored, just like any other baby. There were no easy choices. Life at the hospital was hard. A plan was made to care for Gabriel at home.

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After 30 days in the hospital, the family reunited at home. Gabriel’s bedroom windows faced the woods. They sang, played music and read books. They spent time outside when they could. His sister enjoyed singing “Twinkle, Twinkle.”

They had been home from the hospital for two weeks. Gabriel’s breathing became more shallow. After a clear, warm and sunny spent in the woods, Gabriel died in his parents’ arms.

Gabriel’s short life has meaning. Gabriel taught everyone in his corner of the universe how to love deeply, and to live in the moment. We will hold our children closer, and speak of love and life. His mama donated a cooler full of breastmilk to a local mom, sharing the milk her body made for him with another baby in need, a healing move for more than just one.

And, it just so happened, that one of Catbird Baby’s new mei tai prints featured a forest—just like the one outside Gabriel’s window—filled with deer, rabbits and foxes. We knew. It was mighty Gabriel’s forest.

Might Gabriel CatBird print

MightyGabriel Catbird MT

He never grew up to run and explore the wonderland outside his window or learn to skip rocks alongside his sister. But we know that his spirit lives on in the whisper of the wind, the rustling of the leaves, in the playfulness and purposefulness that is nature.

A portion of all CatBird Baby Mighty Gabriel’s Forest mei tai sales will go to cureSMA, an organization that funds research for the treatment of and cure for SMA. To honor Gabriel, the little guy who never got to go in his own carrier, the CatBird family is walking through the forest of grief with our friends and hoping to inspire others to do the same. 

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Help us spread the word, find a cure and stand with our friends and loved ones who grieve the loss of a child. Nobody should walk the forest of grief alone and we hope that together not only can we support each other, we can also help find effective treatment and cure for future little ones with SMA. For Gabriel.

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To learn more about SMA visit cureSMA.org.

To learn more about Mighty Gabriel and his story visit here.

To learn more about surviving child loss and infertility visit this site.

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guest post, leaky to leaky
Nicole is the Director of Marketing for Catbird Baby. When she’s not talking about baby carriers, she’s usually wearing one while playing mom to her three amazing girls with a coffee in one hand and her phone in other.

Aja’s Story; A #MyStoryMatters Leaky Share

by Aja Davis

Aja Davis, breastfeeding support, guest post

I didn’t always know that I wanted to breastfeed. When my closest friend gave birth at 19, I was happy when she supplemented her milk for the short time she nursed so that I could feed her baby from a bottle. When she became exclusively formula fed, I had made the decision to feed a specific formula to my baby because it didn’t stain clothing or stink as much as the first formula my little goddaughter had.

A few years later, my sister had her second child and was determined to nurse her. She fought the good fight with a nipple shield for almost six months where she was informed that my niece was suffering from “failure to thrive” on her mom’s milk alone and was told to switch to formula.

Shortly after, my friend (mentioned above) had a multiple birth and her babies were sent to the NICU. She was urged to pump for them. The weeks that she transported milk to the hospital, she was a warrior mom! Her dedication to her babies and her milk left me in awe. I visited one day with her and she took me into a very special place called The Lactation Lounge. I had never heard of such a thing. There were a few hospital grade pumps for moms to use to express milk for their babies. There were encouraging signs and posters all over the room. I left the place curious, inspired, and weirded out to have seen my friend topless.

These were my experiences with black women breastfeeding until last year. I delivered a 9lb 3oz beautiful baby boy in November. When we were left for a few minutes after delivery, I tried to latch my little boy on to my breast and he did it! He was suckling like a pro, but he had been sucking his thumb on 3rd trimester ultrasounds, so it wasn’t so much of a surprised that he loved suckling on me.

Things were going well but due to his size, he was a bit of a sleepy eater. It was explained to my husband and I that we needed to wake him on schedule. We woke him, stripped him naked, plucked the soles of his feet, bounced him, turned the tv up as loud as it would go… Nothing worked to keep him awake through feeds. Our 3 day weight check bought on a 4 and a 5 day weight check. At his lowest weight, he had gotten to 8lbs even. We were sent home on Day 5 with a case of formula and ill-sized nipples, told to supplement one ounce of formula at the end of each nursing session.

I was certain I had officially failed my son. I knew that formula could lead to supply issues for me. I nursed my little one when we got home and when he dozed off, I handed him to my husband who attempted to give him a ready to feed bottle. I cried as I pumped, trying to produce an ounce of my own milk so that at the next feed, we would supplement with MY milk.

And we did.

By the next day, he had gained 7oz. I went on to meet with a lactation consultant when he was 9 days old. He had great milk transfer. We were all set to continue on our breastfeeding journey!

At 11 weeks, I returned to work full-time. I was determined to make time to pump at work for at least the first year. Between 11 weeks and 8 months, we dealt with thrush twice, washed more bottles and pump parts than I can count and used many, MANY breast milk storage bags. I am eternally grateful to my supervisor who gave me a wide berth and unyielding support for my dedication to pumping. I am also incredibly grateful to my mother, who looked after my son while my husband and I were at work. She followed proper storage and thawing protocol, as well as stored hundreds of ounces of milk in her deep freezer. At 8 months postpartum, I realized that I was dealing with an oversupply and worked to correct that by not pumping on the weekends and by dropping from 3 pump sessions to 2. This continued until my little guy was 11 months old, when I dropped to one session per work day. At 12 months, I stopped pumping all together. I felt liberated and felt like being free of the pump left me able to nurse forever! Or so I thought.

We had a great time bonding after work and during the middle of the night feeds. At 15 months postpartum, I realized that we were expecting baby number two. While excited, I was concerned about how a pregnancy would affect my breastfeeding relationship with my first baby. A friend suggested that I join a group about nursing aversion (just in case) and one about pregnant/tandem breastfeeders. Both groups were immensely helpful in aiding my navigation of this new, strange territory. It was great for me to learn and see, once the icky feelings of nursing aversion began, that I was not alone. This is especially common in pregnant women. I was able to make my peace by laying boundaries for nursing to help get us closer to my initial goal of two years.

Unfortunately, we made it to nearly 21 months. There is a bit of sadness about that part of our relationship, something that was so sweet, peaceful and calming for us both being gone, but we are okay. During the 21 months we spent as nurser and nursling, we went through several colds, a stomach bug, and the eruption of 16 teeth, and donated over 300oz of milk to babies in need. I am excited that we had the time together and that I will be able to start all over again with his baby brother in December.

Breastfeeding has been one of the best things I’ve even done. I had many people try to tell me I couldn’t do it, suggest formula (which wasn’t need), that I let someone else feed him give him cereal, etc. But in the end, my instincts won out and I am proud of what we have accomplished as a family. (Special and eternal thanks to my husband who washed pump parts and packed my bag many nights, who retained information in our first hours as parents when my mind was full of mush and wonder, and who acted liked nursing a baby was the most normal and natural thing in the world.) I hope to inspire and support other moms, especially black mo, who feel like nursing isn’t a feasible option for them. Moms who feel like breastfeeding is weird, embarrassing, or unnatural.

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If you’d like to share your story with a larger audience, submit your story, photos, and your bio, with #MyStoryMatters in the subject to content @ theleakyboob.com (no spaces).

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Aja D. is a wife and mother who resides in Philadelphia. She hopes to create a nonprofit organization to offer support and education to women of color and/or with low income, aiding them in becoming properly informed of their pregnancy, labor, and postpartum options.

Healing Power of Breastmilk Donation After Loss- In Memory of Maya; a #MyStoryMatters Leaky Share

 by Ulrike K. Ingram

***Please note, this piece covers infant loss in detail and may be triggering for some.

infant and pregnancy loss

My daughter Maya was stillborn at 35 weeks gestation. It was a sudden and devastating loss to find out that after an easy, uncomplicated pregnancy, she had died due to a cord accident. While still being in shock after her death and birth, I started to think about what to do once my milk came in. I knew early on that I wanted to try to pump for donation purposes, but wasn’t sure if I could really do it, physically and emotionally. I planned to just take it one pumping session at a time. I didn’t want to make a long term commitment and then fail. My milk came in when I woke up on the Friday after she died on Wednesday. I started pumping that day and collected maybe 2 ounces of milk during the first session.

I have two older children who I breastfed. When they were younger, I was working part-time and I only had to pump occasionally. Pumping exclusively after Maya’s birth was a challenge. I tried to pump 6- 7 times in a 24 hour period. Three weeks later, I was consistently getting about 5 ounces of milk per session. I was still taking it one session at a time, always worried that my supply was decreasing, or that I was just too tired to get up in the middle of the night to pump. I was very close to stopping maybe five weeks after Maya was born. I struggled for several days with whether to continue or stop. After talking to my husband and praying about it for several days, I felt a piece in my heart about continuing on this journey. It felt like a God given guidance that it was good to pump and good to continue for longer.

Three months went by and I was still pumping, though not as frequently, probably only about four times per day. I didn’t plan how long I would continue to pump because it my only connection to Maya.

Sometimes when I pumped during the day, one or both of my sons would sit with me, or play on the floor next to me. My younger son would ask, “Mommy, why do you have to pump?” or when I’m done, “Mommy, why are you stopping?” I have explained to them why I pump. Although I wasn’t sure they really understood, I recognized that it was okay. Once my younger son told my husband that he likes to play in our guest bedroom because that’s where mommy pumps.

Almost five months went by and I stopped pumping at the end of July – 4 1⁄2 months after Maya was born. I decreased my pumping frequently from four times to three times per day. I then limited the remaining pumping sessions to 10 minutes, then 9 minutes two days later, then 8 minutes, and so forth. I was eventually able to stop pumping without feeling engorged. It was a slow process of letting go, physically and emotionally.

In total, I pumped for 131 days, and donated 470 breast milk bags, an estimation of 2300 ounces of milk. I donated the milk to local moms through a Facebook page, which matches milk donors with moms looking for milk, who for various reasons do not have enough milk for their baby, or want to provide breast milk to their adopted child.

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It has been a privilege and an honor to use Maya’s milk in a meaningful way. It was one of the few things I was able to do in my daughter’s name. It’s part of her legacy. It’s her milk. It was made for her, and I was able to give it to somebody else who needed it. On the difficult days, when I was tired or emotionally drained, I sometimes wondered whether it was worth it. I suspect that the recipient cannot appreciate the value of this milk to the full extent. There is a lot more meaning and love in this milk and the act of pumping and the invested time than the recipients will ever know. I imagine that Maya has been watching over our family from heaven, seeing me pump, and understands that it was for her. It’s her legacy and her memory that is being carried forward and passed on to others.

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If you’d like to share your story with a larger audience, submit your story, photos, and your bio, with #MyStoryMatters in the subject to content @ theleakyboob.com (no spaces).

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Ulrike and her husband have two older boys and then got pregnant with their daughter Maya in 2013. After an easy pregnancy, they found out that she had passed away at 36 weeks gestation due to a blood clotting issue. Ulrike pumped and donated Maya’s milk for several months. It was a way to keep her memory alive in one tangible and physical way for Ulrike.