Sweet Baby Charlotte Rose

Thank you, Maria Parlapiano (AKA GrAuntie Maria) for the following blog submission.  Maria shares Baby Charlotte's survival story of a traumatic brain injury and how human milk is credited with her miraculous turn-around. 


I willfully submit that my faith and resolve in who I am and what I stand for, were put to the ultimate test by none other than a small, injured child.  It was this extraordinary baby that compelled me to fiercely answer the call to advocate and protect for her ultimate good and in turn, for the greater good of all babies and children.

Following is the remarkable account of my experience as “health guardian” of a baby called Charlotte Rose, the miracle bestowed upon her and the unexpected journey she took me on that changed my life forever. 

 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 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 did not know then that my arrival at Children's Hospital 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.  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.

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 is 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.  It was in deep faith that we handed the fate of our baby girl entirely over to God's grace and will.

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.  On the fifth day after her injury, I woke up at 4 am and went over to her crib as usual.   This time though, she looked dramatically different. Now mind you, just four hours earlier when I said good night 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?

Now, I was staring at a baby, whose brain swelling decreased dramatically and she was sucking on her breathing tube!  Needless to say, I was speechless which if you know me, is hard to believe.  I tried to explain it away and rationalize it. 

I was anxious and riddled with self-doubt when the 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!   From that moment on, we would believe and bear witness to Baby Charlotte's miraculous recovery.

So 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.

This is where it really gets interesting.  I announced to the PICU doctor with the nurse present, "Instead of infant formula, I want Charlotte to have pasteurized banked breastmilk."  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 would not win.  The doctor said, "She wasn't breastfed". I said, "doesn't matter, now she needs the most optimal nutrition and breastmilk is a potent medicinal as well."  The nurse said, "But she's 11 months old."  I said, "The benefits of breastmilk 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 went on to say that since Charlotte is going to survive, proper nutrition and support is vital to healing and avoiding complications thus ensuring a faster recovery.   Even though it made perfect sense to me, they appeared annoyed and frustrated suggesting I speak to the nutritionist about it in the morning.

I prepared all night for morning rounds and I was ready.  In comes the PICU team including the nutritionist.  Again, I pitch my plan. The PICU doctor immediately deferred to the nutritionist who admitted she had no idea that human milk banks even existed.  Then she attempted to convince me that the formula they use is "specialized".  Well, we know where that went! 

Then I was informed that their hospital has no policy for the use of banked donor breastmilk.  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 exits the room and proceeds to call her supervisor.  To my surprise, she returns and says, "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.

Our decision to use banked donor milk as part of Charlotte's care plan, as you can imagine, sparked highly spirited conversations among the nurses and doctors about breastfeeding. 

Little did I know that Charlotte Rose would be the one to turn them around and make them believers...?  Sweet Baby Charlotte, who wasn't supposed to survive at all, was charting a course to defy all odds!  With prayers and the miracle of mother’s milk, she began progressing at such a rate - it was simply astounding! 

 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 meds is she on?" None.  "What GI meds?" None.  "Urine output?" Perfect. "Lungs?" Clear. “Labs?” Good. "Oh…OK" - Ha!  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! - LOL

I attest to you that Baby Charlotte Rose is a living miracle, touched by divine intervention. I further attest that the donor breastmilk has played a critical part in the fulfillment of that miracle.  It is truly magical beyond our comprehension.

My mission is to offer hope by sharing Charlotte's Miracle and spread the truth about the healing power of breastmilk.  Most people in the US are not familiar with breastfeeding let alone, the medicinal use of breastmilk and donor milk.   “Why breastmilk 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 seriously require and deserve this unique advantage!

I was also asked what the difference is 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?” a common statement.   There is a big difference between shared donor milk and pasteurized banked breastmilk. 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 virus 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 protocol for expression is 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. (3)  We chose to work with the Mothers' Milk Bank at Austin, Texas, a member of the Human Milk Bank Association of North America.  HMBANA is a non-profit entity with eleven human milk banks in operation across the US and two in Canada.

Am I glad they exist? Yeah!
Is it worth the money? Hell, yeah!

Charlotte has been thriving on it as many other lucky babies do!  No major infections to report and no gastro-intestinal issues to speak of - these are just two of the many benefits Charlotte has enjoyed.   So, next time you ponder breastfeeding or breastmilk – 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 and to all the moms who generously share their miracle milk with those in need.  Bless each and every one of you.

Maria Parlapiano RN, IBCLC,  AKA  “GrAuntie Maria”

References:
1. http;//prdup102.ynet.co.il/ForumFiles_2/23804630.doc
2. http://www.who.int/foodsafety/publications/micro/pif2007/en/index.html
3. http://.ct-aap.org/101021/Dr_Marinelli_Powerpoint_Presentation.pdf

This story is an abridged version of a post by Maria Parlapiano from her personal blog What Would Maria Do?