Pregnancy and Infant Loss- What Helps and What Hurts

By Jessica Martin-Weber
This post has been made possible by the generous partnership of Tula Baby Carriers, Ameda, Inc., and Earth Mama Angel Baby.

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The way we respond to someone’s grief and suffering usually is about making ourselves more comfortable even if the intent is to comfort them. The key to offering true support is empathy, and to cultivate empathy we must first listen and sit with the pain. It is only then that we can come to understand that caring isn’t about fixing but rather, comforting. There is no way to take the hurt away, we can only be there through the hurt.

October is Infant and Pregnancy Loss Awareness Month, a time set aside to educate on these issues. When that month ends, though, our awareness should continue as it does for those who carry the awareness of their loss(es) throughout the year. For those mourning loss, there is more than a month of processing their grief and while we may question our time and emotional bandwidth to be available, when someone we know and care for has journeyed the road of loss, we have an opportunity to make a difference and confirm that they and their loss matters.

Awareness is always just the first step, the second is action. To help us move our awareness into action, we are sharing what parents who have experienced loss say are the most and least helpful ways to act and respond to loss. You don’t have to have experienced similar loss to offer empathetic support and care, we’re all capable even if we’re unsure as to how.

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Understanding

In his book, Grief Counseling and Grief Therapy, J. William Worden explains that miscarriage is seen as a socially negated loss, that for some to even view such a loss as death can bring on guilt. Devan McGuinness, Founder of perinatal loss support website, UnspokenGrief.com and a loss mother herself, on the impact that discovering a friend grieved their own loss saying it: “helped me process my grief by talking with someone who understood and I felt that my grief was more “normal” – meaning that I wasn’t overreacting in feeling such loss and sadness.”

The loss of an infant is also a taboo subject, the fear of causing pain leads to silence and often loneliness in the mourning process. Worden’s Grief Theory describes grief as a U shape. The mourning processes takes us down into deep part of the U, a place that can be lonely and it is better if we can make the journey with others. We have to resist the urge to build a shoddy rope bridge across to avoid going down through the grief. Such an action only disconnects us.

Kari Bundy, founder of the infant loss support organization, Mason’s Cause which offers empathetic grief support with other grieving parents as well as practical information such as how to plan a funeral, shares that she and her husband felt alone when their son Mason died of SIDS at 4 months old and finding practical informative support as well as the emotional space to mourn was overwhelming.

Melinda Olson, founder of BabyLossComfort.com and founder, owner of Earth Mama Angel Baby, labor and delivery nurse, mother and grandmother, has spent decades now supporting families through loss: “It’s hard to know what to say to someone who has lost a baby. Bodies can be healed, but as with all other major wounds,  a scar remains. The same is true for grief. We don’t try to take that pain away, but to hold her hand through it. It’s never easy, but it’s always an honor.” Melinda offers a concise list on what to say to grieving families here.

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What Helps – Remember Them

Jessica: Remember the child. Let the parents know you think of him or her. Trust me, you aren’t reminding them of their loss, it’s on their minds already anyway, but it’s nice to know someone else thinks of your child.

Leah: Don’t forget. Mark the date of loss on your calendar for years to come. What a glowing feeling it would bring me if just SOMEONE remembered my daughter’s birthday.

Kina: It really hurt that my hubby didn’t remember the due date or the date of the miscarriage. It made me feel like I was the only one who cared about my baby.

Tiffany: Speak my daughter’s name, it may bring a tear to my eye but you didn’t remind me she died. (I could never forget) but you saying her name means you remember she lived and that means the world to me. I fear the day when I’m long gone that her memory will be forgotten.

Vivian: Respect my ways of honoring and join me in them. Gifts are nice but your presence matters more.

Bridgette: I have a few friends who light a candle every year on my son’s birthday and send me a picture of their candle in his honor. It means more than I can say that others care for my son too.

 

Question, Wait, and Be Present – Don’t give advice, give availability

Tori: It meant the world when a friend came to sit with me/help take care of my son so I wouldn’t be alone while waiting out a miscarriage.

Anna: I really appreciated those who just listened. I needed to talk about it without any advice or words of comfort… There ARE no words of comfort.

Kara Glenn: Having friends and family check in, bring dinner, invite us over… all of these things make us feel loved, and keep us from feeling isolated.

Dykibra: My advice: ask people what they want. My mother was great and gave me the space I needed.

Dawnn: Helpful? Food. It’s the last thing I wanted to think about.

Amber: The best things was supportive hugs. Having someone call me daily to tell me they loved me.

Alyssa: The most helpful was my best friend helping with the details of planning my daughter’s funeral and understanding my anger about the investigation by the authorities. (SIDS usually requires an investigation.) She let me cry and vent whenever I needed to.

Marinas: It was helpful to hear that It’s okay to be angry right now. There’s nothing fair about your baby dying.

Samone: I lost two pregnancies at 20 weeks. What was not helpful was people saying that I was lucky because the baby would have been born with a deformity. Seriously, I just wish people had said that they were sorry.

“It’s hard to know what to say to someone who has lost a baby. Bodies can be healed, but as with all other major wounds, a scar remains. The same is true for grief. We don’t try to take that pain away, but to hold her hand through it. It’s never easy, but it’s always an honor.” 
~Melinda Olson

What Hurts

There’s no perfect way to support through such grief but there are ways that are hurtful that a little bit of awareness can help us avoid. Loss parents shared some things that are NOT helpful to say:

Sometimes it’s just not meant to be.

It must have been God’s plan.

At least you can have children/At least you already have a child(ren).

Oh yes I know how you feel, my friend had the same thing…

Well it was probably deformed.

You’re not the only person it happens to (because somehow that means I shouldn’t be upset).

Don’t dwell on it.

Charissa pointed out: I don’t need a distraction, telling me I need to keep busy so I was distracted made me feel like it was wrong for me to be sad.

Kara Glenn, mom and Tula Baby Carriers team member talked with me about the loss of her son, Oliver, her daughter’s twin, at 4 months old. You can read her powerful and moving story more in depth here (including loss after infertility). A true empath, Kara shared the conflicting range of emotions she experiences in grieving one child while being present with another. She’s very understanding of the struggle others face when trying to offer comfort.

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Kara’s twins, Avery and Oliver together before Oliver’s passing.

“I do know that people mean well. The death of a baby is a hard thing for people to talk about. It makes people say awkward things. I really try my best to shake it off when something rubs me the wrong way. I just don’t have the emotional capacity right now to focus on it.”

Still, she says, there are some statements that make it harder.

“When they say: ‘At least you have Avery.’ I know they mean well, but by saying that, it makes me feel that I’m not already thankful and grateful that I have my sweet baby girl. Like it’s not possible to both grieve and mourn the death of my precious four-month-old boy, and love his twin sister with every ounce of my being. Another comment that can be hurtful is when people say, ‘I don’t know how you are functioning, I’d be a mess.’ This automatically makes me feel guilty for functioning… for just surviving. Believe me, I don’t know how I’m doing it either. To assume that someone isn’t struggling just because you see them doing something normal like grocery shopping is just plain insensitive and hurtful. There are days when putting one foot in front of the other is the hardest thing in the world. On those days, you likely won’t see me. On those days, the groceries can wait.”

Whether you’ve experienced pregnancy or infant loss personally or want to be able to support others grieving their child, there is no expectation that comfort be offered perfectly. Trying means a lot and doing so with sensitivity and awareness makes a difference. Journey into the deepest part of the U with others by listening and empathizing as you go and you can be a part of making a difference. You don’t have to fix it, just offer comfort through it.

An extensive list of resources for information and support through infant and pregnancy loss a can be found here and for ideas to create pathways of remembrance, see here.

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Jessica Martin-Weber

Drawing from a diverse background in the performing arts and midwifery, Jessica Martin-Weber supports women and families, creating spaces for open dialogue. Writer and speaker, Jessica is the creator of TheLeakyBoob.com, co-creator of BeyondMoi.com, and creator and author of the children’s book and community of What Love Tastes Like, supporter of A Girl With A View, and co-founder of Milk: An Infant Feeding Conference. She co-parents her 6 daughters with her husband of 19 years and is currently writing her first creative non-fiction book.

 

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Paths of Remembrance That Honor Pregnancy and Infant Loss

By Jessica Martin-Weber

This post made possible by the support of My Baby’s Heartbeat Bear

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Content Note: infant and pregnancy loss discussed.


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Loss is profound and deep, that’s part of what makes it loss. The loss of a child amplifies that profound depth of pain in ways that are nearly tangible as loving as deeply as the extraordinary ordinary love a parent has for their children makes them vulnerable to extraordinary pain. Love is always a risk. A beautiful, breathtaking, agonizing risk. One worth taking, as terrifying as it is.

There is no balm for the rawness left after losing a child, no set of steps to follow to make things right again. Grief may have some known stages but each individual journey is unique and the path isn’t always clear. How one experiences grief and processes loss may look drastically different from another’s. The manner in which we move through grief and process loss isn’t a reflection of how real or deep our grief or our love is, it is a reflection of how we personally process, our personalities, and our needs. There isn’t right or wrong, good or bad, or more or less “real” ways to journey through such pain. It is all real and it is all personal. After 4 pregnancy losses, I have experienced how different it can be from one to the next.

Individual paths of remembrance may vary greatly. For some, the ways they remember will be internal with little external manifestation. For others, the external honoring helps center the internal grief, an extension of the love, joy, grief, and pain of their loss. What matters most is the significance to those for whom the memorials provide connection and comfort and while some would never visit such a memorial, others will find healing in something they can touch and see.

Throughout history people have intrinsically understood the need for memorials, external physical representations of the significant losses in our society be it through war, natural disaster, or other tragedy. We build memorials, commission sculptures, fashion fountains, mount plaques, and more to preserve the memory of and respect significant loss in our societies. These memorials provide connections, anchoring points not only for our grief but also for our collective memories, drawing our communities together reminding us not only of those lost but also the importance of having such connections in spite of the risk of great pain. Such memorials honor love and life as well those we’ve risked loving in this life.

So it is with personal loss. Without even realizing it we construct memorials for ourselves even on a psychological level. There is a reason we can feel the anniversary of a loved one’s death approaching without even checking the calendar, our bodies remember. For some creating a tangible expression can be a powerful step in healing, a sort of remembrance path to travel, not to get over their loss but rather to connect with it and embrace the significance. In embracing our emotions and very real loss we can fully grieve, releasing ourselves.

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7 Remembrance paths that honor pregnancy and infant loss

Naming. If your child’s name wasn’t already known to you, consider selecting a name to honor their life and connect you with them as a person. Having a name for the one you’re grieving connects us with the realness of our grief and with the personhood lost. Whether you choose to display and publicly share your child’s name or to keep it to yourself, your heart will hold the name close in comfort and the reality of your loss won’t go unnamed.

Sharing. Society’s discomfort with personal grief tends to silence those that speak of pregnancy and infant loss, it was years before I learned that I had a great aunt and great uncle twins that died in infancy because nobody ever spoke of them. When I asked my grandmother about it she told me nobody ever wanted to talk about them but she thought of them often, just kept her thoughts to herself. We sat together that afternoon and memorialized the relatives I never knew who held a special place in my grandma’s heart. Speaking of those we’ve lost is a powerful way to honor and remember them. Sharing our stories of loss connects us with others and comforts both those sharing and those receiving.

Images. With pregnancy and infant loss we may not have very may still images or video given the short time our children were with us but any images we do have or ones we create are not only a cathartic connecting point for us as their parents, these images can invite others to connect as well and celebrate the joy that was, honoring the pain that is. Sonograms, bump photos, pregnancy announcements, birth photos, whatever we do have may be  Be they kept in a private place or displayed in a special place in your home or a unique framing, the images of the children we have lost can give us a focal point in our grieving and remembering.

Audio. As with images, we may not have much by way of audio of the children gone too soon but the sounds of those we love are amongst the most difficult memories to hold onto. Any audio we do have, a recording of the first heartbeat doppler or ultrasound, the sounds of our own voices sharing our happy expecting news, first cries, newborn gurgles and coos, whatever it is we have, these sounds may be comforting evidence of the life of one we love. With today’s technology we can memorialize those precious sounds in special picture frames, card, or even a stuffed animal to hear whenever we need to.

Green and Growing. One of my dear friends lost a child she never got to hold other than in her womb. After a grueling delivery experience, she and her partner decided to plant a tree with a garden stone bearing their child’s name and the date as well as words that she had associated with the pregnancy up until the time of loss. That was 7 years ago. Today this beautiful tree has grown solid and tall, a climbing tree for the other children in the family and neighborhood. Under the tree planted in their child’s honor picnics, parties, life and love unfold regularly. “Riley’s Tree” has become a special connecting anchor not only for my friend but for their community, a beautiful tribute to Riley.

Rituals. Lighting a candle at certain times, touching a special stone, telling certain stories on certain dates, playing a specific song, and wearing certain articles give a sense of security much like the environmental ritual of seasons.

Personalized. During pregnancy I select an animal for my baby. Everything I purchase and make for them with that animal is theirs and what I intend to save as heirlooms. For the pregnancies I’ve lost they become talking points with my surviving children. The stuffed puppy, the little robin, they were bought with love for a baby that we never got to play with.

No matter how you honor the memory of a child you have loved gone from this world too soon, the greatest memorial that can ever be is to live fully, honoring those we have loved and lost by living well, daring to go on risking our hearts by connecting, loving, and remembering.

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Jessica Martin-Weber

Drawing from a diverse background in the performing arts and midwifery, Jessica Martin-Weber supports women and families, creating spaces for open dialogue. Writer and speaker, Jessica is the creator of TheLeakyBoob.com, co-creator of BeyondMoi.com, and creator and author of the children’s book and community of What Love Tastes Like, supporter of A Girl With A View, and co-founder of Milk: An Infant Feeding Conference. She co-parents her 6 daughters with her husband of 19 years and is currently writing her first creative non-fiction book.

 

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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.

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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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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.
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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.

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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.
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