Celebrating His Fourth Birthday

Today, September 10, 2016, my little man turns four.

FOUR!!! How did that even happen??

As I sit here typing, I find myself wondering what most four year old boys would want for a birthday gift and what type of party themes are popular.

I wonder, but I don’t really know…

There will be no gifts. No four year old themed party with handmade decorations. No house full of rambunctious little people singing happy birthday to the man of the hour. No adorable party guests asking for “just one more piece of cake”.

Yes, today is my son’s birthday, but it is also his heaven day – the day he died. These days are one in the same.

Although this is a sad truth, and a difficult part of my reality, I choose not to dwell or let my focus live there.

Instead, I choose to find joy.

I remember what an amazing little boy my son was, and how his brief life had an amazing impact. I think about all the things that have happened in the past four years because of him. I recall the ways he has changed my life and the lives of others.

I choose to celebrate… and invite others to join the celebration.

Instead of a dirt-and-dinosaurs theme party (or whatever a four year old boy might want), this year we celebrate Amalya Nathaniel and his 1 hour and 20 minutes of life by asking people to “Do 4 Others” – instead of gifts or cards, we want people to pick one (or more) of the following:

1) Purposefully do something special for a family member, friend, or acquaintance.
2) Give blood at your local Blood Bank
3) Register as an Organ Donor – https://registerme.org/
4) Give 4 things to a local food pantry, or give $4 to your favorite charity/ministry/church.


Today, I choose to embrace my son’s fourth birthday with excitement. I am so proud to be his mother. He accomplished so much during his time on earth and I hope that this year his legacy will grow even more and his impact will be even deeper.

Today my little man turns four! Happy Birthday sweet boy with all my love….

Donation for Research – A Reason to Celebrate

I love the month of April. The earth comes alive again after a long and dreary winter. April brings with it a sense of hope. It’s no wonder April is National Donate Life Month.

Each year I join millions of others in celebrating and raising awareness about organ, eye, and tissue donation. Like many, I started celebrating National Donate Life Month after my life was directly touched by donation – but not in the typical way. Most people spend the month sharing stories of how their loved one gave the gift of life through a donation for transplant, or how they themselves (or a loved one) received a life changing transplant. My story fits into neither category.

Three and a half years ago, in September 2012, my son passed away 80 minutes after being born. His life was brief, but he was loved for every second of that life.  Once my son passed, we allowed him to became a donor. A donor for medical research. Weighing only 4 lbs. 9 oz., he was too small to qualify for any types of donation for transplant. When we learned that he would not qualify for transplant donation we were sad, because we would have loved for our son to directly save another person’s life through transplant. But, this disappointing news did not stop us from wanting his life to still make a lasting impact through the gift of donation.  When we were presented with the option of donating to medical research, we were thrilled. We were even more thrilled to learn our son would be able to give his liver, his pancreas, and later his whole body, each to a different research recipient.

Over the years as I’ve shared my son’s story, I have found many people do not understand the importance of our son’s gifts or the impact that a donation to medical research can make. Somehow people view his gifts as less valuable because they did not go for transplant. Some have even struggled to view him as a true donor. Please realize, as I stated before, we would have loved for him to be a traditional donor – with organs and tissue going for transplant – but that is how his story turned out. What I can tell you however, is this: my son’s gifts were valuable, extremely valuable. His gifts were utilized by his recipients (the researchers) to further investigate Type 1 diabetes, liver disease, and pediatric interosseous vascular access. They also provided training for emergency medical providers and first responders. His gifts were even able to assist in getting a new procedure passed through the FDA – a procedure that has already saved lives!

Yes – his gifts were valuable.

My son’s donation also became a catalyst in allowing a new neonatal organ and tissue donation program to form through an organization called the International Institute for the Advancement of Medicine (IIAM). IIAM specifically places organs and tissue with researchers when donation for transplant is not an option. Prior to my son, IIAM had not worked with neonatal donors. Since helping to find placements for his gifts, they have to date gone on to help the families of 56 other babies who have passed right after birth (all from natural causes) have an opportunity to donate to research recipients. From those 56 donors, IIAM has been able to place 178 organs/tissue, all for medical research. Most of these neonatal donors were like my son, too small to donate to transplant. The option of donating to medical research allowed them to still give the gift of life!!

Stop for a moment and think about the amazing discoveries that are being made through those 178 gifts and the number of lives that will be saved and improved because of the generosity of those 58 donor families! It is truly incredible. Truly something to be celebrated.

Our story of donation may not be the traditional story. My son may not have given like others were able to give, but his gifts still had value – great value. I am a very proud donor momma and always will be. In some ways I feel like his gifts have impacted more people because they went to medical research, instead of going for transplant. This April, I boldly celebrate National Donate Life Month and my son’s gifts to medical research!

To register to become a donor please visit https://www.registerme.org/



Donate Life Float

On November 12th I made the exciting announcement via facebook that I had been selected to ride on the Donate Life Float in the Rose Parade in honor of our sweet boy, Amalya Nathaniel! It’s hard to believe that “Float Week” is already here!!! Eric and I are currently sitting in the airport waiting to start our journey! This week will be full of adventures including: decorating the Donate Life Float, attending a special Rose Planting Ceremony to honor Amalya and all neonatal donors, meeting lots of amazing people in the donation world, going to several fancy dinners for the donor families, experiencing the float judging, exploring Pasadena, California, and of course – riding on the Donate Life Float down Colorado Boulevard on New Year’s Day!!!!

I can’t even begin to tell you how excited I am right now! I hope to write a little each day to share about all our amazing experiences.

Since announcing that I had been selected for this amazing honor, several people have asked for some of the “back story”. It all started on Amalya’s 3rd birthday when I received a very unexpected call from Gina, a friend who works for the International Institute for the Advancement of Medicine (IIAM).  For those of you who don’t know our story, IIAM is the organization who found placements for Amalya’s liver, pancreas and whole body. We were IIAM’s first neonatal donor family and the catalyst for IIAM starting their neonatal donor program. After some small talk, Gina said that she had some incredible news to share. She went on to explain that each year IIAM’s parent company, the Musculoskeletal Transplant Foundation (MTF), sponsors one person to ride on the Donate Life Float in the Rose Parade. This year I was that person! I was BLOWN AWAY! I never imagined anything like this would ever happen.  After a few minutes of regaining my composure, I said, “Gina, do you know what today is?” She said no. So I told her, “Today is Amalya’s 3rd birthday and heaven day! Talk about an amazing birthday gift!” We were both in awe for a few minutes, and then dove into planning.

From September to November everything was “hush-hush” as I was not allowed to announce or share anything publically. During those months Eric and I did lots of work behind the scenes filling out forms, writing our story with very specific word limits, get photos to the float committee, and participating in phone conferences for planning purposes. As each step came together I became more and more excited. During this time I also learned that Amalya is the first neonatal donor that has ever been sponsored by MTF (other neonatal donors have been represented on the float previous years through sponsorship by various organizations, just not MTF). Amalya is also the FIRST EVER research only donor to be represented on the Donate Life Float!!!! To say that again – this is the first time in the history of the Donate Life Float that an organization has sponsored someone to represent a donor who had ALL their gifts go to RESEARCH!

Having my son be represented on the Donate Life Float – a national and iconic platform – is an unexplainable honor and privilege, but to know that he is also helping raise awareness for the importance of both neonatal donation and donation for research (something that often gets a second place seat in the donation world) makes this event even more special! My heart is so full… talk about a “proud mommy moment”!

For those of you who are interested you can read the MTF press release about the exciting event and you can also view my (Amalya’s) profile on the Donate Life Float website. You can also watch a 1 minute interview that our local news station did about Amalya and the fact that we are riding on the float!

Finally, I have had several very kind people ask if we need any form of financial assistance to cover the cost of our trip. I am thankful and blessed to say that our entire trip has been provided by MTF! We can’t say enough about MTF and the amazing organization that they are!   If people feel moved to give, they can feel free to donate to Purposeful Gift to help raise awareness about the importance of neonatal donation!

I can’t wait to share more once we arrive in Pasadena!!!

CuddleCot Fundraiser

A few months back I shared about some special t-shirts that were created as a kick off for a project that Purposeful Gift chose to sponsor. The project is to raise funds to purchase and donate a CuddleCot to one of our local hospitals – Miami Valley Hospital.

Between our shirt fundraiser and one generous donation, I am happy to say we have raised about 1/3 of the funds needed to purchase a CuddleCot.

As the next phase to our fundraising efforts, we were able to partner with one of our local Chipotle Restaurants for a charity night (sadly this is local and specific to this ONE Chipotle restaurant). For those who are local, on January 11th from 6-9pm, if you go to the Chipotle on Brown Street and mention Purposeful Gift to the cashier, 50% of the money from your order will be donated to our cause! We are very excited about this event and hope it will be successful.

We are also planning a Basket Raffle (tentatively scheduled for February 6th – Location to be announced).   We have already started collecting items, and let me tell you, there will be some pretty awesome items. Most items will be for local pick up only, but I have a few items that we will offer in a small “online raffle”. Stay tuned for more information!!!

Although Purposeful Gift’s primary goal is to raise awareness for neonatal organ, eye, tissue, and whole body donation, as well as providing support for families and education for medical professionals, our board felt strongly about helping our local community. We felt providing this extremely needed item would be a wonderful way to support all loss families who deliver at our local hospital.

For questions or additional information about this special project feel free to contact me via e-mail. Our goal is to have enough funds to purchase the CuddleCot and donate it to Miami Valley Hospital by March 2016.

Special Project

This fall, the board of Purposeful Gift decided to take on a special project with the hope of helping a local hospital meet the needs of families who will experience the loss of a baby. Although the primary mission of Purposeful Gift is to raise awareness and educate about neonatal organ, eye, tissue, and whole body donation, we felt this project would be an amazing way to serve local families affected by loss.

Embrace the Beauty of BirthSo, what is our exciting new project? Purposeful Gift has decided to raise funds to purchase a CuddleCot for Miami Valley Hospital in Dayton, Ohio. A CuddleCot is an innovative cooling system which helps preserve the appearance of a baby after he or she has passed away. For families who experience a loss and who will not be able to bring their baby home, it is important to make lasting memories in the hospital before they have to say goodbye. This cooling system can add extra hours of precious bonding time.

As our first fundraiser, Purposeful Gift launched a Teespring campaign offering a shirt that says “Embrace the Beauty of Birth.” We want families to embrace the beauty of birth, but also be able to embrace the beauty of their baby when time is short.

We look forward to adding updates about this project as we move forward.

In Full Bloom During May

Purposeful Gift was in “full bloom” during May! The month started with an amazing opportunity for me (Bethany) to speak at the American Transplant Congress Conference in Philadelphia. I was a co-presenter for a Lunch and Learn along with a good friend and colleague from IIAM. Although this particular conference was focused on transplant, the goal of our Lunch and Learn discussion was to share about the new options that exist for neonatal donor families in the area of research donation. It was wonderful to share the advances being made for neonatal donor families, as well as resources to help both professionals and families who choose this option. After our presentation we facilitated an in-depth group discussion with members from our audience which was comprised of attendees from both the US and Europe. I was extremely grateful to be able to participate in this awesome event.

During my trip to Philadelphia, I had the joy and privilege of meeting another momma who had a baby with anencephaly. Jenna, mother to baby Shane (AKA the “bucket list baby”), made the choice to carry Shane to term, to embrace his life, and to love him as much as she could. It was wonderful to sit with her over lunch and talk about our boys! We were able to share the good, the bad, the heartbreak, and the joys that we have experienced during our journeys. We had such an amazing time! I love the instant connection we had because of our journeys and our sweet boys’ lives. Although I wish we did not have to meet under these circumstances, I am thankful for the friendship we have and the strength we can share with each other.

Mid-May brought a huge surprise when an article I had written in April for a website called The Mighty was featured on Yahoo’s home page (you can view it here)! Never in my wildest dreams did I expect this article to be featured on such a large platform. The article quickly attracted tons of attention and by evening it was “trending.” At one point I was able to take a screen shot with nearly half a million views. It was also shared hundreds of time on Facebook. The next day I got a call from a reporter who works for Dailymail.com, and I had an interview that afternoon, followed by a second article being featured on the Dailymail.com homepage (you can view it here) which was shared several hundred times. I also learned that the Yahoo! article was translated into three other languages and was featured on several different countries’ versions of Yahoo.


Although it was exciting to have something I wrote be seen by so many people, and my momma’s heart beams with pride over the impact my son is still having. I think the best part is the fact that it brought awareness about neonatal donation! My hope is that other families will be able to participate in donation if they are faced with a fatal fetal diagnosis or infant loss. I hope that healthcare professionals will become aware that options exist and will start providing accurate information when asked about neonatal donation.

It was also wonderful to receive e-mails from many people thanking us for being willing to donate, but also sharing their own stories of neonatal donation – some occurring 30-40 years ago. It was awesome to hear how donation brought healing to these families and how even now, years later, these families are happy they made the choice to donate!

May ended with another opportunity for Eric and I to share our story by speaking at a workshop for IIAM. This was our fifth time speaking at this particular workshop, and it has become one of our favorite events. We enjoy connecting with the participants, discussing neonatal donation, and encouraging the various organizations to embrace neonatal donor families. During the workshop we were also able to meet one of the researchers who utilize donations from neonatal donors. It was amazing to hear about the work this researcher is doing and how it will impact thousands of lives in the future. I look forward to sharing more about that topic soon!

As we enter June, we have already begun our next project: translating our forms, documents, and the entire website into Spanish. We received a request from an organ procurement organization to provide some material in Spanish, and thanks to the wonderful efforts and support of a Spanish speaking mom in the anencephaly community, we have already added these two documents to the website, and we will move forward over the summer!

Spanish – Neonatal Donation Preliminary Information Document

Spanish -Request to Contact OPO Document

We look forward to seeing what comes over the summer months. If there is ever a way we can serve you, or ways that you think Purposeful Gift can serve the community, feel free to contact us!

Myths and Facts of Neonatal Donation

In honor of National Donate Life Awareness Month, I wrote this blog post for All That Love Can Do, a site that supports families who continue their pregnancy after a fatal diagnosis. I write for ATLCD monthly, and although I typically do not share the posts here, I thought the content of this post worked nicely here as well. There is lots of misinformation surrounding neonatal donation, hopefully this will help others who are considering donation.

Before I start, I want to be clear on one thing: I think each and every life has intrinsic and inherent value. Each one of our precious babies has had an impact on the lives of others and this world. I do not believe donation makes a life “more valuable,” nor do I believe that families who chose to donate are “better” in any way. I do, however, believe that donation can add an extra layer of meaning to a life that is brief and that donation is one way to create a lasting legacy for our babies. I also believe that families should be given the choice to participate in donation, and then supported equally regardless of what they decide about donation.

With that said, I would also like to point out that the world of neonatal donation has been growing and advancing in big ways over the past few years. What was available ten years ago is much different than what was available five years ago, and that is much different than what was available two years ago, and that is even different than what is available NOW. So, if you read something and say “that’s not what I was told”, you are probably are correct, that wasn’t what you are told, but there is a good chance things have changed.

Myths and facts of neonatal donation:

  • Myth: My baby will be alive while the surgery takes place, or my baby will be in pain if they participate in donation.
  • Fact: A recovery surgery only takes place AFTER a baby has passed away and their heart is no longer beating. Neonatal donation NEVER takes place while the baby is still alive. Your baby will not feel any pain if they participate in donation.


  • Myth: My baby will need to be taken to the surgery moments after they pass away.
  • Fact: In neonatal donation situations, most of the time there is a window of time before a recovery surgery would need to take place. Often you could have anywhere from 45 minutes to 12 hours with your baby after they pass away before a recovery surgery would need to take place, depending on what is being donated.


  • Myth: Even if my baby doesn’t need to go for surgery right away, I will still lose time because I won’t get to see them again after the surgery.
  • Fact: In most cases, if the family desires, arrangements can be made with the recovery team and the hospital to have your baby brought back to you after the surgery so you can continue spending time with your baby and making memories .


  • Myth: My baby would not qualify for donation because….
  • Fact: Yes, it is true that there are qualifications (weight, gestation age, when death occurs, your baby’s condition, the organ procurement organization that is near you, your delivery hospital, etc.) to participate in any form of donation but, due to recent developments in neonatal donation:
    •  In some cases, organ/tissue donation for research may occur as early as 28 weeks gestation. In some cases, organ/tissue for transplant may occur as early as 36 weeks gestation.
    • There is no minimum weight requirement to donate to research.
    • Babies with a variety of conditions including (but not limited to): anencephaly, acrania, trisomy 18, and hypoplastic left heart syndrome can donate to research and, in some situations, transplant.
    • The same exact process is used to recover organs/tissue for transplant as for research.


  • Myth: The only type of donation that “really helps” is organ or tissue donation for transplant.
  • Fact: Organ donation for research is just as important as organ donation for transplant. Donation for research is also the most viable option for most situations. Often researchers are using gifted organs or tissue with hopes of curing pediatric illnesses. In many cases, neonatal organs produce enzymes not found later in life, so these gifts are priceless from the research perspective.


  • Myth: My (_____) told me donation wasn’t an option, and it must be true.
  • Fact: Due to the fact that things are changing continually in the world of neonatal donation, many times doctors, nurses, genetic specialists, other loss moms, and even some employees of organ procurement organizations are not familiar with the most CURRENT options for neonates. If you would like to participate in some form of donation, but were told nothing exists, please be persistent; do not take the first “no” as a final answer.


Did this blog make you think of a question about neonatal donation?  Feel free to chime in below with your questions or contact us. We would be more than happy to answer your questions. If you have a story of neonatal donation, also feel free contact us. We would love to hear your story. As always, if you are in the middle of pursuing donation and would like help, we are happy to assist you in any way possible.

If you would like to help share facts about neonatal donation with your medical care provider, feel free to download and print our Neonatal Donation Fact Sheet for Medical Professionals!

Legacy Milk – Part 2

Yesterday we highlighted a special type of donation that some families choose after saying goodbye to a baby at birth – milk donation. Today we continue the celebration of “legacy milk” through a guest blog post written by Amy, mother to baby Brody, talking about her donation experience. If you missed yesterday’s post here is a link: http://purposefulgift.com/legacy-milk-donation/


When you first receive a diagnosis of anencephaly, you go into shock. It’s nearly impossible to wrap your mind around the fact that your baby, moving and growing, otherwise perfectly healthy, is going to die either at birth or shortly thereafter.

Shock intermingles with grief, sometimes anger, and even despair. But amidst the myriad of emotions, God gives hope and purpose. I knew this all had to be for a reason. Perhaps I wouldn’t know all the reasons until heaven, but I could find some, and do my part to bring them about.

One of my first thoughts when thinking of how I could use this horrible situation for good was through milk donation. I knew my body would naturally produce and, at first, this added to the sorrow. Then I began investigating if my milk could be used for other babies. I got some mixed information and yet, still felt a strong desire to pursue this opportunity.

I learned that Ohio has a milk bank that will accept donations and process them to be used in hospitals with the sickest of babies – often times with preemies that tend to only thrive on human milk. There was paperwork and a couple of phone calls, an application and blood work… before I knew it, a pump had arrived in the mail and we were close to our due date.

Fast forward to February 17th, 2014 the day of our son, Brody Micah Whitsel’s, birth – a beautiful, tragic, and yet precious day. After a difficult delivery and no sleep for two nights, the time to say our final goodbyes had arrived. I was alone with my husband and our boy, and we gave our final kisses, and he left the room to hand him over to the nurses. I began to sob and waited for my husband to return and hold me. Moments later a woman walked in the room just before he returned. Without going into detail, this was the worst part of our experience at the hospital. She was a lactation consultant, her timing was terrible, and maybe she didn’t realize it but she was completely insensitive. After she left I was worried that my pumping and donating experience would not be helpful after all.

Thankfully the support and advice did not end with her. God led me to a distant relative that was also a lactation consultant! I had no idea! She lives across the country. We wrote back and forth, and she helped me tremendously those first crucial weeks. I also found great help through a Facebook anencephaly group.

Physically, it was difficult at first. I didn’t feel I was emptying fully and would get blocked ducts. I struggled getting up in the night and not having my baby, but just a machine. After just a few weeks, my mother bought me a really nice Medala pump with all extras you could want. I have to say this made a huge difference! It was so much easier to use, much more efficient, and it resolved many problems I was having. Other issues resolved as I tried tips and tricks that I learned from others.

Emotionally, I found it to be very healing. Yes, there were many tears associated with it when, at times, I resented all the work and time I gave, and I didn’t even get to bring my baby home. When I struggled with the first pump, I would cry and say, “I’m sure this would be easier if I just had my baby!” However, the positive benefits far outweighed the difficulties.

In hindsight, I think it was a life saver in those first few weeks. I couldn’t do much else as I was recovering physically and grieving at the same time. It gave me a structure to my days. It was a somewhat simple task that I could do several times a day and gave me that sense of accomplishment and purpose when I was otherwise just lying around and watching a lot of TV!

One difficult hurdle came when I called the bank to say I had my first box ready to ship. They asked a few questions and we quickly discovered that they wouldn’t take anything I had pumped so far! I had been taking Ambien and, though it’s perfectly safe, they still wouldn’t take it. I was devastated! All that work and sacrifice, for nothing! I quickly reached out to my FB anencephaly group and almost instantly they pointed me to a resource – Human Milk for Human Babies. Within hours I was connected with four mothers who wanted my milk! I asked them a few questions and quickly knew which one I should pick. We set up a date and she drove over an hour to come pick it up. I was quite nervous about it all. We just chatted in the driveway and then she offered to introduce me to her little baby girl. In my mind I hesitated and thought it would be too hard, but my heart said go for it. She was beautiful! I was overjoyed to see this tiny little girl who needed to grow and know that I was able to help her.  Of course, after they left I did go in the house and have a good cry! But I was so thankful that I didn’t have to just toss all that I had collected from those first weeks.

I ended up pumping for three months. I discovered that I could stretch out the time in between sessions significantly and my body just adjusted beautifully!  I only pumped twice a day for weeks! This was a huge blessing as I was back to work and pumping several times a day would have been much more difficult to coordinate.

Weaning off was similarly easy. I’d heard horror stories about the pain and all these unusual techniques to stop the milk from coming in. I found I could just space out the pumping sessions more and more until I did once a day, then once every 48 hours, and then just hand expressed a little bit in the shower to relieve some pressure, and then I was done! I was so grateful that it seemed so easy to me to stop the process.

Sending in that last box was so exciting but sad, too. I felt a wonderful sense of accomplishment. I was relieved to finish that chapter. I was thankful for Brody and saw each ounce as a gift that came from his life. I was sad, though, because I felt like a part of Brody was gone. I didn’t want to stop because it felt like letting him go all over again. At the same time though, I knew it was time, and I was ready.

Everyone is different and many have different experiences, even with their living babies. I know pumping is not for everyone. I would however highly recommend looking into it and giving yourself time to ask, is this for me? I believe God will direct each woman’s heart and give peace about her decision. For me, pumping was the right decision.  Yes, I miss my boy every day, but only God knows how many babies we were able to help – maybe even save – through our donation.


Thank you, Amy, for sharing your journey and for donating to those in need!

Legacy Milk – The Impact of Milk Donation

When a family suffers the loss of a baby it is extremely important to for that family to find ways to honor their child’s life in both big and small ways. Many families try to find ways to create a lasting legacy for their child. Although some pursue organ, eye, tissue, or whole body donation, this type of donation is not for everyone (either by choice or circumstance). Thankfully, there are other ways to participate in donation. A few months back we highlighted donation in the form of blood samples donated to research studies in our blog post “All Donations Matter.” Today we are going to focus on another amazing opportunity for donation that is often overlooked – breast milk donation.

Many people do not think about the fact that after a mother loses a child, especially if it is a full-term loss, that mother will most likely still produce breast milk. This can cause a full range of emotions, and each person deals with these emotions differently. Although many people make the choice to dry their milk up quickly, others make the choice to encourage their milk to come in so they can pump and donate that milk. Donated milk can either go directly to another family who is in need, or be donated to hospitals to help babies that are in the Neonatal Intensive Care Unit (NICU). Donating milk is a true sacrifice and commitment. Not only does it take emotional fortitude, but a large time commitment, and the willingness to ignore physical discomfort. Despite the sacrifice, for many bereaved mothers, the investment is worth it. This “liquid gold” or “legacy milk” as some people call it, is invaluable for the babies who receive the nourishing benefits of the donation and allows a mother to create a lasting legacy for the baby she misses.


Tiffany, mother to baby Joy, shares some of her current journey of milk donation:

“I wanted to donate Joy’s milk because after doing clinicals in the NICU, I realize how in need these babies and families are.” Tiffany says she has the goal of pumping for 6 months. So far, in less than a month Tiffany has been able to pump a little over 600 ounces and has been able to donate 300 ounces. “Pumping has helped me heal because I believe that by helping others, we help ourselves. I would recommend donating milk to every lactating mother, not just those who have lost their baby.” So far, Tiffany has been able to donate directly to other mothers and is in the process of getting approved by the Mothers Milk Bank with hopes of donating through that organization. The mothers that she has been able to donate to directly have been extremely grateful for the donation and are happy they have not had to supplement with formula. When asked what insight she has for other mothers, Tiffany states, “The only insight I have is to stay consistent with pumping and if it becomes too much, don’t feel bad if you have to quit because you’ve helped by just donating 1 bag. That’s something to be proud of.”


Mary, mother to baby Nathan, shares about her journey of donating milk:

“I didn’t consider pumping and donating right away. It was my husband that first mentioned it to me, and after meeting with another couple who lost one of their twins and went on to donate, I was sold on the idea.” Although Mary didn’t think she could handle going through the engorgement and pain that would come with pumping, she chose to donate for many reasons. “I had nursed both of my older boys until a year or so and knew from experience that I was an overproducer in the beginning and I thought it would be easier on me to pump and wean gradually. Breastfeeding had also always helped melt away the pounds and I was hoping it would do the same this time. So, for both personal reasons and thinking of those we could help, I chose to donate Nathan’s milk.” She goes on to explain that donating became a family endeavor saying, “I should say WE chose to donate, because it truly was a family effort. Without my husband and boys to support me and help out, I wouldn’t have been able to do it. I pumped for almost 3 months, starting when Nathan was born October 1 (2014), and ending the day after Christmas (2014).”

Mary was able to pump 3434 ounces!!!! She chose to donate those 3434 ounces to a milk bank that helps supply her local hospital with milk for babies in the NICU.

Mary said, “Being able to do that was incredibly healing. It helped me feel as if I didn’t have to say goodbye to Nathan all at once, a part of him was still with me. It also helped to know that because of him, others were benefiting and it gave his life even more purpose.” Mary says she would recommend pumping and donating to other moms but shares some advice by stating, “I would make sure you go into it with realistic expectations and be ok with stopping if need be for physical or mental/emotional reasons. It can be very challenging to have your baby’s milk when they aren’t here. For others, it just doesn’t work out and I would hate for anyone to be discouraged. No matter what, if it is something you think you want to try-go for it and see what happens.” As a thank you to Mary and to honor baby Nathan, the milk bank she donated to has placed a leaf with Nathan’s name on their giving tree and has invited Mary to come visit. Mary reflected on how kind and compassionate the milk bank was through their entire experience. Mary sums up her journey by saying, “To be able to help others who desperately need it and have my son be a part of that was worth it.”


Danielle, mother to baby Kadence, shares some of her current journey with milk donation

When asked what made Danielle consider donation, she shared two stories that had a deep impact on her. She states, “I was a part of a yard sale group online and one day I saw a post that planted the seed. In this post a mother had left her baby with her husband at home as she went to the store. She was in a car crash and passed away. Her very young baby had been breast-fed and now had no source of food.” Danielle explained that the group was asking local mothers to consider donating extra breast milk to help this family. Danielle was still pregnant and had no way of helping. A short time after she came across a second post, that again impacted her. “I read another post about a mother and father who went out and left their children at home. They were hit by a semi and both passed away. They had four children, their youngest being three month old. Once again they were asking for donating breast milk. But this time was different. This mother had been over producing and had donated her extra milk to two other families while still being able to supply for her baby. Now there was not just one baby without food but three.” Sadly, she was still unable to help due to being pregnant. But that did not stop her desire to help, “I decided that once Kadence was born I was going to honor her by donating her legacy milk to other babies in need.”

Danielle, who delivered her daughter, Kadence, in January, has now been pumping for seven weeks and has donated hundreds of ounces of “legacy milk.” She says she plans to pump for at least three months, although she has had to cut back some due to various life situations. She states that pumping has helped her in multiple ways, “I believe pumping help me, not only emotionally but physically.” She encourages other moms to pump, even for a short time to accelerate the healing process after pregnancy. “I would 100% recommend it. Yeah it’s hard to continue waking up two or three times in the middle of the night to pump, but it’s okay if you don’t do that! In the beginning I was able to, but now I just pump three times during the day.” Although she notes that her supply has gone down, she is happy to still be getting milk. “It may be a smaller amount than I was getting but it will still help! There is a saying that ‘there is no footprint too small that it can’t leave an impression on this earth’. I may not be getting 50+ ounces a day anymore, but that small amount will still help.”

Danielle has made the choice to donate directly to other moms. One way she has accomplished this is through a Facebook group called “Eats on Feet.” She decided not to donate through a company citing that many companies who supply hospitals also bill the hospital and make money in the process, She says, “The purpose I donate is to help babies in need.” She does not want a private company to profit. Danielle is now saving milk for a friend. “[She] is planning to adopt and wants the best for her new baby. It feels good to know that her baby will be able to have breast milk even though my friend can’t physically provide it.”

Danielle has been happy with her donation experience. She reflects on the journey by saying, “Emotionally [pumping] can be hard, but then it’s also amazing. I wish I was feeding my baby, I wish I had Kadence in my arms but I don’t. She’s in heaven where she feels no hunger. There are babies here who are in need. And feeding them, knowing that your baby is allowing you to help other babies, that’s a great feeling.”


Thank you to Tiffany, Mary, and Danielle for sharing your experiences and for generously giving to others, even in the face of loss. Thank you to all the other moms who made the choice to donate milk, create a lasting legacy for your baby, and provide nourishment for babies in need.

Please join us tomorrow for “part 2” of our legacy milk celebration. We will feature a guest blog post written by Amy, mother to baby Brody. (Link to Part 2: http://purposefulgift.com/legacy-milk-part-2/)

Compatible With Love

Incompatible with life.

Sadly, these are the words that parents hear all too often when they receive a life-limiting or terminal diagnosis for their baby. These words cut like a knife.

How can the sweet baby kicking inside of me, the amazing little person I see moving on the ultrasound, the one who has already stolen my heart, not be compatible with life? Isn’t this baby already alive?

Questions like these fill the minds of parents as they try to comprehend the term that was given to define their child’s condition. Often, following the delivery of this diagnosis, comes the word “terminate”. After all, why should a pregnancy be continued if the baby is not compatible with life?

Families have finally taken a stand against this harsh diagnosis, and this week a meeting is taking place in Geneva with the United Nations to end the use of the term “incompatible with life.” Our sweet babies, regardless of diagnosis, have life — even if that life is limited to the time in the womb — they are still alive. Often, our babies defy the diagnosis and live for seconds, minutes, hours, days, months, or years after being born! They are indeed compatible with life.

You can read more about the push to end the term “incompatible with life” by clicking here.

You can also join the efforts by signing a petition by clicking here.

As all mothers who have experienced a diagnosis like this, regardless of the labels, regardless of the definitions, regardless of the diagnosis, we know that our babies are COMPATIBLE WITH LOVE!

To help celebrate our babies who are much more than a diagnosis, I (Bethany) have created these shirts which are available until March 23rd. If you would like to order a shirt, click here for more information. (Multiple sizes and colors are available.)

Compatible With Love