The science is clear: Our very own mom-made Miracle Milk® provides perfect and customized nutrition and lifelong protection against many illnesses and diseases.
But one exciting question is still unanswered: can breast milk be used medicinally as treatment in babies –and even older children and adults– who may not have been breastfed? There is a growing body of evidence suggesting all sorts of uses for breastmilk as treatment of adult disease. Ads may say, “Milk: Does a Body Good” but in all likelihood, human milk can do a body, any body, better.
Baby Charlotte Rose wasn’t breastfed. Until the age of 11 months, she was a happy, healthy little girl. All that changed radically when she suffered a traumatic brain injury.
Charlotte’s aunt, a nurse and lactation consultant, went to extraordinary lengths to enroll the care providers at St. Mary’s Hospital in West Palm Beach, Florida in her plan to help Charlotte heal with banked donated breast milk. Human milk is the quintessential brain food — unlike formula, it is naturally loaded with easily absorbed fatty acids like Omega 3’s which are critically important to normal brain and mood development and functioning. In fact, the use of high doses of Omega 3s to treat traumatic brain injury patients is an exciting new frontier in brain rehabilitation. A baby with a traumatic brain injury has a double-need for Miracle Milk®! But St. Mary’s had no donor milk policy for fragile babies. Huge kudos to the pediatric nurses, nutritionists and physicians at St. Mary’s, and later at Joe DiMaggio Children’s Hospital in Hollywood, Florida, for the courage it took to open up to new ideas, let down their guards, and get on board with using donor milk. Human milk is a Super Food but they are Super Heroes for breaking from the pack and making it happen!
It is Best for Babes’ intention that this story raise awareness of the crucial role human milk plays in our collective health, and to make donated human milk more available to those who need it (see our Miracle Milk® Fund), so that mothers who can’t or don’t breastfeed can offer this world-renowned “second-best” option to their babies — especially those who are premature, sick, or otherwise compromised. We understand fully the pressures and the obstacles that make breastfeeding unattainable for too many moms and we fight every day to defend ALL moms and to beat those Booby Traps! Read: Our Credo. We also hope this story will provide a much-needed guide for other parents and relatives who may lack the words or the data to back up their request for donor milk for their baby.
Here, in her own words, is Maria Parlapiano’s story of grandniece Baby Charlotte’s journey.
In December, my grandniece Charlotte Rose suffered a massive, traumatic brain injury. She was eleven months old. Airlifted to a Level 1 Pediatric Trauma Center, Charlotte endured emergency brain surgery in an attempt to relieve severe swelling. She was availed of every possible life-saving intervention including being placed in a medically induced coma. I immediately boarded a plane to be by her side and so our journey began.
I always equated flying with a happy event like a vacation or destination wedding. This time, I cried during the whole flight, promising myself I would never make that assumption again. I was overwhelmed with compassion for those suffering like me: confined in a plane, cut off from communication, trapped in my own thoughts, distraught, enduring what seemed like the longest flight of my life.
I did not know then that my arrival at St. Mary’s Hospital in West Palm Beach, Florida marked the beginning of what was to become a 16 day, 24/7 bedside vigil over the crib of Baby Charlotte Rose. All my life experiences, both personal and professional, seemed to reach a most urgent crescendo at this urgent moment in time. Raising three children to adulthood through some difficult times, surviving breast cancer and navigating through life-threatening illnesses, training and working as a nurse in emergency medicine centers, and my business as a lactation consultant devoting my life to the health and well-being of mothers and babies swirled around me. This varied history would serve as a deep well to draw from and provide me with the essential tools for the vital work that lied ahead.
By instinct, the first thing I did was cast the widest net possible for support and spiritual guidance for the family, as well as myself. I knew we could not walk this alone and my faith told me, we would not walk this alone. So out went the net. Using the vast world of technology at our fingertips, we emailed, posted, texted and phoned everyone we knew to summon their support and ask for their prayers and good intentions for Charlotte.
From that platform, we faced a series of events that would bring us to our knees, break us to our core. Two days after surviving the brain surgery, Charlotte’s condition took a drastic turn for the worse. Her brain swelling accelerated out of control. Her major organs were failing – we were losing our little girl.
After review of her head CAT scan, Charlotte’s condition was deemed fatal – physicians informed our family that there was no hope of recovery. We were informed that even when she was eased out of her medically-induced coma, Charlotte would be brain dead. Devastated beyond words, we grappled with disbelief and deep sadness. Multitudes of believers were holding us up with their prayers and intentions, refusing to give up hope.
Our family was resolute that Charlotte’s death not be in vain. That her short life not be wasted but used as an instrument for good. She was an excellent candidate for organ donation. So we had our initial meeting with the organ donor team leader. Charlotte would be a hero, so young yet so noble, leaving a legacy of hope and new life.
As soon as Charlotte was weaned off all medications, which the doctors estimated would take about 24 hours, the two day protocol for the establishment of legal brain death prior to organ donation would begin.
We used this time to prepare ourselves to let go and hand over our precious one. Her mom was assisted in the creation of a Memory Box which contained a lock of Charlotte’s hair and a casting of her hand and foot prints. Agonizing plans were started for Baby Charlotte’s funeral service. We reached out to our Christian folk for special Bible verses and songs. Family members and friends planned their pilgrimage to offer their condolences and celebrate Charlotte’s short but joyful life. Prayers and devotions continued as Charlotte’s mom refused to give up on her girl. No matter what anyone said, she still hoped for a miracle.
By then, I was sleeping in Charlotte’s room most every night. I truly cherished that time – quiet and private. There was definitely a strong spiritual presence – it was a sacred space. Routinely, I would sing her favorite bedtime song and tuck her in around 12:30 am and then try to get some sleep. Frequently, I would wake and check on her. She looked awful, her head was so swollen it even scared me and I remember thinking, how could she live another hour, let alone, another few days?
On the fifth day when I said good night, I woke up at 4 am and went over to her crib as usual. This time though, she looked dramatically different. I was staring at a baby whose brain swelling decreased dramatically and she was sucking on her breathing tube! I tried to explain it away and rationalize it. I told myself that what I saw was most likely a result of a diuretic medication or an aberrant spinal cord conduction. I tried to convince myself that it was meaningless, nothing to get excited about or get your hopes up over. After all, it is impossible for anyone to survive this. That is what the experts said.
I was anxious and riddled with self-doubt when the Pediatric Care Intensive Care Unit (PICU) team entered. Curious to see what they thought but with no expectation of good news, my niece and I stood patiently by while they examined Charlotte. Then the doctor turned to me when she was done and said, “This baby is not brain dead.” My chest felt like it was going to explode! My niece nearly jumped out of her skin! After taking a deep breath, I asked the doctor to repeat what she said. After another deep breath, I asked her to clarify. The doctor proceeded to tell us that Charlotte’s cough and gag reflexes had returned, her pupils were now reactive, she responded appropriately to painful stimuli and her bodily functions were kicking in – we got our baby back! We were overwhelmed with emotion and pure joy!
Changing gears in my head, I prepared for Charlotte’s life, not death. After a day or so after her awakening, I noticed a nurse bringing in a container of powdered Nutramigen (hydrolysate baby formula). Charlotte had been receiving only intravenous nutrition at that point and had a naso-gastric tube in place to avoid abdominal distension. When I asked the nurse, she informed me there was an order to start feeding her this formula via the feeding tube. Taken by surprise, I did what came naturally and laid on, what I refer to as, the “Post-Storm, Jerzee-Fresh Body Block!” I politely told her (as only one from New Jersey can do-Ha!) to hold off what she was doing and asked if I could speak to the doctor.
I announced to the PICU doctor with the nurse present, “Instead of infant formula, I want Charlotte to have pasteurized banked breast milk.” Well, they looked at me like I had two breasts coming out of my head! The following is a series of statements and counter statements, detailing the debate that they ultimately did not win: The doctor said, “She wasn’t breastfed.” I said, “It doesn’t matter, now she needs the most optimal nutrition and breast milk is a potent medicinal as well.” The nurse said, “But she’s 11 months old.” I said, “The benefits of breast milk have no expiration date, Charlotte deserves every advantage possible.” The doctor said, “Nutramigen is a very specialized formula” I said, “Nutramigen is 46% corn syrup and 25 % vegetable oil – I wouldn’t call that special or nutrition.”¹ I explained that since Charlotte was going to survive, proper nutrition and support is vital to healing and avoiding complications, thus ensuring a faster recovery. Still unconvinced, they suggested that I speak to the nutritionist about it in the morning. I prepared all night for morning rounds — putting the evidence together to make the case that Charlotte, who was still greatly compromised, deserved to receive the best shot at a full recovery with the help of human milk.
In the morning, I presented my plan to the PICU team, including the nutritionist. The PICU doctor immediately deferred to the nutritionist who admitted she had no idea that human milk banks even existed and attempted to convince me that the formula they use is “specialized”and well-suited for a fragile baby. I was informed that their hospital has no policy for the use of banked donor breast milk. My answer to that was, “Frankly, I am shocked as it is used all over the country. But, there’s a first time for everything and I am proud that Charlotte will be that first one. What a wonderful learning opportunity for everyone!” The nutritionist added that most parents wouldn’t be able to afford donor milk anyway. I said, “They should be given all options and then decide for themselves what they can afford. We can’t afford it alone but we will raise the money. I do not view this as a luxury. I view this as a necessity for Charlotte’s sake.” The nutritionist exited the room to call her supervisor. To my surprise, she returned and said, “You buy it, you ship it, we’ll hang it.” She also agreed to provide a refrigerator in Charlotte’s room to store her daily requirement of milk.
I took this as my cue to try to educate the entire PICU staff about the risks of using powdered infant formula, mixed at the bedside with sterile water and left hanging in an IV bag for hours. This practice is highly inappropriate as powdered formula is not sterile like the liquid formulations. In order to kill the bacteria that may be present in the powder, it must be mixed with boiled water not falling below 70ᴼC, then cooled to room temperature and consumed immediately.² Children in their unit are highly compromised and cannot afford a life-threatening infection. Continuing to practice in this way places their patients at increased risk and jeopardizes their own professional licenses.
Our decision to use banked donor milk as part of Charlotte’s care plan sparked highly spirited conversations among the nurses and doctors about breastfeeding. As expected, down came the “fallout” from the staff which pummeled me like a torrential rain storm. I was the brunt of many backhanded jokes and received the “cold shoulder” from quite a few nurses. This was especially disturbing since I am a nurse. Personal opinions were flying high and judgment was plentiful. This prevailing attitude of disapproval brought a new concern – the negative impact it would have on Charlotte’s care – and I could not have that.
Research has shown that feeding medically challenged babies this nutrient-rich milk eases digestion, promotes growth and development, and helps to prevent infection. Breastmilk (your mom-made wonderfood) provides important vitamins and minerals for children including the brain-cell builder taurine. While taurine is not an essential amino acid, its high concentration in breast milk does seem to indicate a need that cannot be met by the child’s own body. How much taurine is in formula or cow’s milk? None! Yet extremely high levels of this “smart” substance are found in the brains of children, indicating that it is an important aid to brain growth. Ninety-six percent of brain growth occurs by the age of five years.
Disease resistance is another benefit of breast milk, which contains 37 known immune components and can be divided into the following categories: protective bacteria, enzyme “attackers,” protein binders, antiviral agents, and antibody “defenders.” It is the job of these “fierce” mechanism groups to find and destroy any viruses or bacteria that may harm the babies, while also making sure they get enough protein and nutrients.³
I knew that since this was a teaching hospital I would have lots of opportunities to educate during morning rounds. But I also knew that the key to unlocking the breast milk door was through hearts, not just minds. I spent many hours having individual conversations with the nurses and other staff about their own breastfeeding experiences and exposures (many of which were grounded in their own hurts and lack of awareness — Booby Traps!). One nurse was brave enough to share that she was “grossed out” by breast milk. Another accused me of putting undue financial pressure on our family.
I was also asked about the difference between breastmilk from a human milk bank and donor milk directly from moms who are breastfeeding, commonly called “milk sharing.” This issue comes up frequently as many people are confused and concerned that milk from the human milk bank is “so expensive.” “Why pay for it when you can get it for free?” is a common question. There is a big difference between shared donor milk and pasteurized banked breast milk. In a case of extreme compromise, like very ill or injured children and premature babies, rigorous screening of donors and pasteurization of their milk eliminates any chance of viral or bacterial transmission. Because in those cases, even the smallest infection, whether viral or bacterial, could prove life-threatening. So the screening process for donors is rigorous, strict protocols for expression are observed, and the milk is pooled and pasteurized to kill any viral or bacterial load. This is done with extreme care as the milk banks are able to retain 97% of the quality of the milk. It is this vital protection that you are paying for.⁴ We chose to work with the Mothers Milk Bank of Austin, Texas, a member of the Human Milk Bank Association of North America.⁵ HMBANA is a non-profit entity with eleven human milk banks in operation across the U.S. and two in Canada.⁶
In the midst of all this education and emotional outpouring, Charlotte Rose began progressing at an astounding rate! Sweet Baby Charlotte, who wasn’t supposed to survive at all, was charting a course to defy all odds and her recovery was making them all believers in the power of prayer and the miracle of mother’s milk.
The neurosurgeon said he had never seen a baby so responsive. “Every time I come in here, I just can’t help but smile,” he said. The trauma doctor would go through his checklist with the nurse, “What cardiac medications is she on?” None. “What GI meds?” None. “Urine output?” Perfect. “Lungs?” Clear. “Labs?” Good. “Oh…Okay!”
Every morning before the PICU team would make rounds, I would whisper to Charlotte, “Go ahead little girl, show ’em what you can do,” and she would. They would discuss at the bedside what Charlotte’s capabilities were. “Well, she’s not tracking with her eyes.” Yes, she is. “She most likely can’t hear.” Yeah, it appears she can hear, according to the audiologist. “She doesn’t move her left side, arm or leg, right? Wrong! As Charlotte proceeded to almost kick him in the groin!
Little by little, the staff began embracing our Charlotte Rose. The energy changed completely for the better as our miracle girl transformed the hearts and minds of those around her. Believe it or not, they even embraced me in the end. There were lots of tears shed and hugs given when I left to go back home. Especially difficult was saying “goodbye for now” to Charlotte, my angel on earth. Filled with awe and gratitude, I reflected on the journey she took me on…one of personal enlightenment and reaffirming faith.
Baby Charlotte Rose is a living miracle and donor breast milk has played a critical part in the fulfillment of that miracle. It is truly magical beyond our comprehension. She continues to progress at a rapid-fire pace — a few days ago she underwent a surgery to free her from her NG tube. She came through with flying colors!
My mission is to offer hope by sharing Charlotte’s Miracle and spread the truth about the healing power of breast milk. Most people in the U.S. are not familiar with breastfeeding, let alone the medicinal use of breast milk and donor milk. “Why breast milk for Charlotte?” people asked me. The evidence is overwhelming that human milk is absolutely the best nutrition a human baby can have – it’s species specific. Premature, injured and sick children require and deserve this unique advantage!
Is it worth the money? Absolutely! Charlotte has been thriving on it as many other lucky babies do! No major infections to report and no gastrointestinal issues to speak of – these are just two of the many benefits Charlotte has enjoyed. So, next time you ponder breastfeeding or breast milk – remember, it’s not just the best nutrition, it’s also the best medicine. Baby Charlotte Rose is living proof of that!
On behalf of Charlotte and my entire family, I would like to thank all those who rallied to our cause by contributing to Charlotte’s Miracle Milk® Fund. Lastly, a special thank you to all the moms who generously share their milk with those in need. Bless each and every one of you.
Update: Baby Charlotte went home from the hospital last week and has progressed from being entirely tube-fed to taking breast milk in a cup and mixed with food! We are elated and rooting for Charlotte and her whole family