A Grateful Mom.

The following blog post was submitted by the mother of a former donor human milk recipient. Her story demonstrates the heart-wrenching experiences of families with fragile babies, and the critical importance of non-profit milk banking in supplying safe donor milk. Links have been created to explain some of the more medical terminology – explore as you would.

Hunter was born July 6, 2011 with jejunal atresia.  A previous ultrasound at 34 weeks gestation, detected the obstruction as well as meconium in the fluid.  My obstetrician reassured me that it was treatable; it just meant that he would need to have surgery and would spend a little time in the neonatal intensive care unit.

I went into labor on July 5, 2011 at 11:00pm.  I was so elated to finally be having him and getting him the help he needed. The delivery was a lot more stressful than I could have ever imagined. His shoulders got stuck, resulting in a broken clavicle. The worst was yet to come.  He got stuck again at his abdomen.  I will never forget the look on my OB’s face as he started to panic and urge for me to push harder.

Hunter came into the world grey, swollen, limp and makingno sound.  My immediate thought was that I was too late.  The NICU nurses worked quickly to suction his lungs and when he finally cried, it was so faint.  Apparently, his intestines had torn at the obstruction site and he bled internally while in utero.  His belly was so distended that he looked pregnant.  He was immediately rushed out of the delivery room and into the operating room.   

The surgeon explained that it was the worst bowel obstruction he had ever seen and he has been practicing since the 1970’s.  He lost a lot of blood during the surgery and was still losing.  He ended up going into cardiac arrest but by the grace of God, was able to be saved.  The doctors didn’t give us much hope, he was still losing blood and they couldn’t find the source.  Hunter ended up losing one third of his small intestine, including his ileocecal valve resulting in Short Bowel Syndrome.

He stayed in a medically induced coma for almost 3 weeks, in which time his total blood volume had been replaced.  He was on several rounds of antibiotics to clear up the infections.  He was being fed through a central line and was eventually able to be fed breastmilk through an nasogastric (NG) tube. It wasn’t until he was almost 5 weeks old that I was finally able to hold him.  It was the best day of my life!

I was adamant about breastfeeding him, but since I couldn’t actually hold him to nurse, I opted for pumping.  He quickly developed Dumping Syndrome, which was devastating to him.  The breastmilk was fed through the NG tube, only to go straight into his ostomy bag. He had absolutely no time to absorb any nutrients.  We hoped that once he was resected, that the “Dumping Syndrome” would be resolved, but until then, the hospital gastroenterologist made the decision to put him on formula because it was more broken down.  That was the worst decision he could have made. I continued to pump hoping he would be able to have my milk.  I pumped for 2 months until I had nowhere else to store my milk. His freezer box at the NICU was full and both of my freezers at home were full.  I was so devastated!

Over the next 4 months, Hunter struggled to grow, absorb and live.  The NICU had done everything they could for him and encouraged us to seek more specialized treatment.  We made the decision to transfer him to another hospital out of state, in hopes for more specialized shortgut treatment.   The specialty hospital immediately put him back on total parenteral nutrition and Lipids, and donor breastmilk. I was a little freaked out by it, but was assured it was pasteurized and what he needed to thrive. The neonatologist explained about a recent study with breastmilk and shortgut babies.  The breastmilk was shown to help the intestines grow better and faster.

It didn’t take long before we saw a huge improvement in his overall health.  I tried desperately to restore my milk supply, but was unable to.  Thankfully, the original NICU in Louisiana was so kind enough to ship all my frozen breastmilk to Texas so he could use up what I had.  Once that was gone, he resumed the donor breastmilk.  Hunter was finally able to go home on December 9, 2011.  We still had a long road ahead, but he was stable enough to be home!

 
We had strict orders on the amount of milk he was to be given.  He started off at only .5 oz every 2-3 hours, which gradually increased to 4oz in a matter of months!  I know that without the donor breastmilk, Hunter would have died.  His little tummy couldn’t handle the formula and I was unable to provide my own milk for him.   

Today, Hunter is a very happy 20 month old! It’s still a bumpy road, but we’re seeing great progress. He has a g-tube now and is on continuous feeds for 20 hours a day. I just can’t thank you enough for donating your breastmilk! You gave my son a chance at life and for that I’m eternally grateful!

From the Desk of the President

The Prez says…..

Hello, my name is Dr. Peter B. Untalan and I am a neonatologist here in Austin.  A neonatologist is a doctor who takes care of sick newborns.  The babies a neonatologist takes care of can include a full-term infant born with pneumonia or a heart condition, but most people associate us with taking care of premature babies.

Premature babies face many challenges on their journey to get home with their parents.  They aren’t big enough to maintain their own temperature. Their skin is so thin they can literally dehydrate in a matter of hours.  Their immune system is so fragile that normal skin bacteria can cause life-threatening infections.  Their lungs are tissue thin and some need extra oxygen when they go home.  Their brain and eyes aren’t completely developed and any interruption in development can be damaging to the baby’s brain and ability to see.

Technology is developing at a rapid pace, allowing us to take care of smaller and smaller premature infants-some of whom weigh less than a pound!  However, while technology may help us to manage and support increasingly smaller premature babies, neonatologists feel that nutrition in the form of human milk remains the single most important “treatment” to protecting our most fragile babies.  In future blog posts I’ll talk about how neonatologists use human milk and the many ways in which it helps these little ones navigate through the rough waters of being a preemie to get home.

There is no happier day in the NICU than discharging one of our little ones and getting them home with their parents.  It takes an incredible team effort and all of you donors out there are a major part of that team!  So, tell a friend what you and the MMBA do for little babies, post about it, tweet it, instagram it, graffiti it (okay maybe not that last one) because we always need more milk to help these babies not only to survive, but to thrive.  Thanks!

{Peter volunteers his ‘spare’ time as President of the Board of Directors of the Mothers’ Milk Bank at Austin. In his other ‘spare’ time he spends time with his family. Here, see youngest son enjoying what looks like a delicious snack! Yikes, what a mess!}

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?

Saving Luke.

Enjoy the following blog submitted by a mother who receives donor human milk from the Mothers’ Milk Bank at Austin for her son. She shares her emotional trials of finally having a son, not being able to breast feed, watching her child not tolerate formula, and finally, receiving life-giving milk from compassionate milk donors to the Mothers’ Milk Bank at Austin. Thank you, Monal, for sharing this story!

My husband and I have been happily married for six years. Most of those years were spent trying to have a baby.  We encountered heartbreak after heartbreak, miscarriage, being told my eggs weren't good enough to conceive, that I couldn't carry a baby to term.  We felt hopeless and broken. Finally, through a wise acupuncture and IVF team, and the help of a great surrogate-mom, we finally have our precious baby boy, Luke.  He has been a long-pined-for blessing in our lives.

From the beginning, we wanted our son to receive the most wholesome, healthy, nutritious food on the planet - breastmilk.  Pediatricians, nurses, La Leche league, and friends alike told us that the healthiest start in life a baby can have is through his diet of breastmilk.  It was heartbreaking for me, as a mom, because I couldn't provide breastmilk for our son, even though I tried through acupuncture and various holistic means.   Our pediatrician appealed to our milk bank.  Our milk bank has provided for Luke since his birth.

Austin Milk Bank has been a blessing of epic proportions for Luke and in our lives.  It's the dedication and hard work of the men and women of the milk bank that has kept Luke getting his milk, getting healthy, thriving... Our second enormous blessing is the selfless mothers out there, who donate milk to the milk banks, so that families such as ours, can get safe, healthy food for our baby.  

When our son was three months old,  for a brief few weeks, the milk bank ran low on milk -  when milk donations are low, fragile preemies and ill infants who desperately need breastmilk to survive, are given first priority in the distribution of breast-milk. We support this structure fully, and feel very blessed that our son is healthy. During this time of getting no donor milk our son was on formula.  We found out very quickly that he simply could not digest formula. We tried three different brands in three weeks. He was constipated, threw up with every bottle, and rapidly lost weight. He became dull - his eyes were listless. We were in tears. We were so scared for our son. 

Mercifully, the Mothers’ Milk Bank at Austin understood our plight, our fear; and because wonderful moms were donating more breast milk, they were able to send us milk again.  Once Luke was back on his milk, he began gaining weight, meeting his milestones, (we call them milk-stones :)), enjoying his food... we breathed huge sighs of relief.

 

When you look into the eyes of your precious baby, and see that you're meeting their needs, you feel like a parent.  When you're providing milk for your baby, do you see the joy, peace, and contentment in their eyes? Thanks to amazing moms like you, I see that look in my son's eyes as well. If you're a mom who's contemplating donating your milk, please let our story reach your heart.  When I, as a mom, can't produce milk for my baby and provide him with much-needed nutrition, it's heartbreaking. We don't know what we would do without the Mothers’ Milk Bank.  We can't imagine how hard they work to appeal to moms, to raise awareness for the need for milk donations, and to raise milk donations.  So many moms we talk to simply don't know there's such a huge need for breastmilk.  If you're donating your milk, please know that you are heroes for us.  You are our life-savers. You may never have to administer CPR, or jump into a pool to save a life. But with your milk donation, you are saving lives every day. Tiny, fragile infants, clinging to life, get your milk and survive.  Ill infants get your immune system protection through your breastmilk and survive.  By donating your milk, you've helped pull a baby through its darkest hours.

When our child drinks your milk, please know that we say silent prayers of thanks and blessings to whoever has donated their milk.  Please know that we are deeply grateful for your incredible generosity.  Your role as a mom and human being is vital in our lives.  When we get our weekly breastmilk, we feel so relieved - I get very emotional when I put away the MMBA milk in our freezer - we feel your kindness.

A wise president once said "There, but for the grace of God, go I". Any one of us could be a mom who can't conceive, or produce her own milk. Any of us could know the terror of having a premature or ill baby. Where would we turn to for getting nutrition and immunity and strength into our baby?  For us, we turn to you through the Mothers’ Milk Bank at Austin. Our son is smiling, happy, thriving, because of you.  When our son is older, we will teach him the lessons that you wonderful moms and the milk bank is teaching us - donating, giving of yourself, understanding the painful plight of people around you and having great empathy for them, acting on that empathy and with your heart- that is the essence of a human being and parent.   We send your profound gratitude and blessings.

For the hardworking, compassionate, and incredible people at the Mothers’ Milk Bank at Austin - we have such regard and gratitude for you.  We know that every ounce of breastmilk you send us is earned through sheer dedication of mind, body, spirit.  Words cannot express our thanks. You do more for us than you will ever know. Who you are and what you do makes a life-changing difference in our lives.  We owe the joy of our son's health to God and to you. 

Thank you!

  

With love and thanks - Jeff, Monal, Luke