Sometimes prematurity brings with it unexpected challenges. That was the case in Saran’s story, which is complicated and sometimes difficult to read. But miracles happen, and she has been kind enough to share the long road she walked in her prematurity journey. This is Pt. IV – you can find Pt. I here, Pt. II here, and Pt. III here.
While milk donations reduce the level of stress of not being able to adequately nourish my baby, I do worry and have concerns related to unscreened, untested and unpasteurized milk, which apart from the risk of virus contamination, may also carry potential bacteria from incorrect storage and transportation. Though initially hesitant and reluctant to accept donations through milk sharing, I am comforted by the faith and trust that these moms wouldn’t feed their babies anything that is harmful, and knowing that I’m not the only one who struggle with it every day. Besides, like many other moms, I don’t have the time and luxury to pick and choose- we have to feed our babies.
I cannot begin to tell you how moved I am by the number moms on milk share forums, as well as the social networking site, Facebook and HM4HB (Human Milk for Human Babies), who responded with kindness and generosity. Who graciously shared their milk with baby Elise, a baby of whom they know nothing about except for the fact that she’s a preemie with a heart condition and in desperate need of milk. There were moms who were willing to drive the distance to deliver milk to us, and moms who broke into the last stash of milk that they had saved for their baby and made sure we had a supply of milk for Elise.
I can’t begin to express how grateful I am for their acts of kindness. Whether from afar or right around the corner, these moms came together as a community to do one thing that our health insurance would not do, to provide the much needed nourishing milk for sick babies like Elise. As we counted our blessings in the ounces of milk donated from strangers, we received wonderful news that the Mother’s Milk Bank of San Jose would donate milk to Elise for 2 months.
In the quest for finding milk for my baby, I have learned that I am not the only mom who was denied coverage by their insurance, despite having a prescription. There are still many moms with babies as sick as Elise, who haven’t been as fortunate as us, and are still in need. Though I accept milk bank donations with gratitude, I can’t help but feel a tremendous amount of guilt and sadness. Every day, moms are turned away empty-handed, from milk banks nationwide, and are forced to turn to complete strangers for milk through informal milk sharing or settle for the very formula that their baby isn’t able to tolerate.
Sadness, anger, and frustration fills my heart when I see donors hounded by the multiple moms begging for a donation; these moms have to plead in desperation for someone to consider donating to their babies over other babies. Moms who donated so much to other babies that they run out of milk for their own child and become the ones desperately seeking milk from others. Moms that must heartbreakingly say no to returning moms seeking more milk. Moms that sacrificed some of the donated milk they received to help nourish another baby in need. And it goes on…
It is absolutely illogical for insurance companies to not cover it as it could save the health care system tons of money in cost savings. And it’s truly a shame that there aren’t any publicly funded milk banks to assist these desperate moms. And it’s truly a shame that the Kardashians get more public attention when an everyday crisis like this, that we face individually and as a community, gets little publicity, if any.
Elise is our greatest achievement. From pregnancy complications, the struggles we experienced in the NICU, to the obstacles we encountered in providing nourishment for Elise, these experiences have challenged and refined me in ways I never anticipated. It has made me more compassionate toward parents of premature babies, and even parents of full-term babies alike, who struggle to provide their babies with breast milk and must seek it from others, and more grateful for moms who give graciously. I am humbled, as we have found ourselves desperately in need of other people’s help.
As a way to express our appreciation and gratitude for all the moms who have selflessly shared their milk with our special premature baby Elise, my sister-in-law and I are seeking to establish a 501(c)(3) non-profit organization. Once established, the organization will assist families with their milk prescription costs, ensuring that each baby will receive the human breast milk they so desperately need. I am writing to you in hope that you can help us start our non -profit organization, so that we may begin our mission to make pasteurized and screened breast milk more accessible when medically needed.
No baby or child should ever be denied prescription milk. You can help by connecting us with the appropriate person/organization, who is experienced with forming a non-profit organization, grant writing, and funding, or donate to our worthy cause. We would love to become your sister non-profit organization, if you are interested or would consider a partnership with us. Any help you can give will tremendously make a huge difference in the lives of these children and their families.
Thank you for your support in helping us help parents nourish their babies.