Saturday, January 19, 2013

Sharing A Miracle

 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 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 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.

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.
Personally, I held tight to my friends' compassionate words and selected scripture verses, leaned on my colleagues for guidance and encouragement. I reached out to my employees and clients for love and strength, my grown children for their dedication and devotion to our family.  Everyone was in place, loyal and steadfast. 
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.
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, then the two day protocol for the establishment of legal brain death prior to organ donation would begin.  
We would use 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 reach 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.  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 told myself that what I saw was most likely a result of a diuretic medication or 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 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.
Immediately, I reach out to my lactation colleagues on-line for help (via my iPhone 4, - LOL) I was beyond exhausted and summoned them for the citations, numbers and names for what I needed. As expected, they did not disappoint.   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!"  Finally the lack of anything better to say, the nutritionist shared her opinion that most parents wouldn't be able to afford it anyway.  My response to that was, "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."  End of conversation.  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.
Unfortunately for her, I wasn't done yet and
took the opportunity to educate the entire PICU staff on the risks of using powdered infant formula, mixed at the bedside with sterile water and hung for hours.  This practice is highly inappropriate as powder 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 below 70 degrees C,  then cooled to room temperature and consumed immediately. 2  No doubt, 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 as well as jeopardizing their own professional licenses. (Jerzee-Fresh, coming on again)  Great way to make friends, right?  Not.
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 as I am a nurse) Personal opinions were flying high and judgment was plentiful.  One nurse was bold enough to share that she was "grossed out" by breastmilk.  Another accused me of putting undue financial pressure on our family.  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. 
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.  So how was I going to turn the tables to our favor?  Obviously, lots of TLC and “behind the scenes” staff education.   It was a teaching hospital, so during morning rounds there was an entourage of minds I could influence in a positive way.  I knew the doctors were my avenue to the nurses so that would be my approach.  If I could convince them then the nurses would surely follow suit. A solid strategy, I thought.   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
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.
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!
Research has shown that feeding medically challenged babies this nutrient-rich milk also eases digestion, promotes growth and development, and helps to prevent infection. Breastmilk 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. But 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 per cent 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 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.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 US and two in Canada.6
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”
To follow and share in the miraculous recovery of this very special child go to: