By Trish Whitehouse
“Your baby cannot have your breastmilk.”
The words shot through me like a bolt of lightning. I looked up at the German doctor’s eyes and choked out in utter shock, “What?” He repeated softly, “The baby cannot tolerate the fat in your milk. He cannot have your milk.”
My thoughts went blank, and then raced with denial. Being a La Leche League leader, I’d heard countless times from distraught mothers that their babies couldn’t have their milk. Most of the reasons were given by misinformed pediatricians, and were situations where premature weaning could easily have been avoided. So the line “Your baby cannot have your milk” was no stranger to me. But somehow I knew this was real and I could feel the weakness behind my knees as though I had gotten hit with a baseball bat.
The doctor went on to explain. “You see this white drainage in the chest tubes? It is called chyle and it is a form of fat. When the baby has your milk, the fat cannot be digested and it gets dumped into his chest and out this tube. He has what is called a chylothorax.” We sat in an eternal flash of silence. I shot a desperate gaze to my heartbroken husband and ordered, “Call the lactation consultant!”
With my eyes stinging, I walked out of the room and paced in the hall, taking deep breaths to keep my emotions from exploding. “It can’t be true. They’re wrong.” I told myself over and over. “I’ve nursed three kids, well past toddlerhood. None of them has needed it as much as this one. Only yesterday they told me he was septic, all of his blood had an infection, and I am sure the antibodies in my milk will pull him through. I know they’re wrong. Barb will tell them they are mistaken and I’ll be able to nurse him. She’ll tell them.” But my legs were still stinging and my gut told me this was serious. It is amazing how we can deny with our minds, but our bodies know truth.
The elevator door opened and Barbara Ackerman, lactation consultant at Yale New Haven hospital, approached me with her arms open, saying, “I heard this morning, but septic babies can do very well on the antib…” “No, no. Not that.” I corrected her. I’m not talking about the septicemia. They just told me I couldn’t nurse him. He can’t have my milk. Something about the fat. I don’t know what they’re talking about, Barb, come tell them they’re wrong. I don’t care about being septic”. Now, a life threatening septic blood infection seemed insignificant in the shadows of not being able to nurse my three-month-old baby.
Together we walked into the Pediatric Intensive Care Unit with a determination and panic only a mother can know. “Tell ‘em, Barb, Tell ‘em.” was my mantra on the short walk to his room. But when the doctor again explained the diagnosis to the allay at my side, she could only try to soften the blow by telling me that it was temporary, that chylothoraxes do heal, and that sometimes they can mix the formula with a little bit of breastmilk. Barb reached out her hands toward me, and within seconds I was reduced to a sobbing child, being comforted in my surrogate mother’s arms.
Just that morning, day 5 after his surgery, I held Bobby in my arms. He had been off the respirator for two days and was recovering without incident, so the doctors agreed to let me begin nursing him. Everything started to feel right again as I held him close to my body and felt his warm cheek nuzzle against my breast. “We’re on the way home,” I told myself with pride. “This wasn’t so bad after all.” I began planning the joyous homecoming in my mind. I sat back in the recliner and sleep began to overtake both of us.
As the day progressed, however, the feeling of peace I had in the morning gave way to worry, anxiety and finally terror. Little did I know that it would be seven months before I would hear the precious “suck suck swallow” sounds I had taken for granted just hours before. Bobby became increasingly short of breath after his 10 am nursing. By noon he had difficulty getting a deep breath and his nostrils were flaring with from the effort. His chest muscles heaved to show his ribs with each inhalation. He would wake up every 20 minutes screaming, but would refuse to be comforted at my breast. Early afternoon found him too lethargic to rouse, and struggling to breathe. By evening, he was panting at 80 to 100 breaths per minute. His only response was to sporadically open his eyes and look through mine as if to say, “I don’t know how much longer I can do this, Mom. Make it stop.” My eyes felt like they were bathed in stinging acid. My baby was suffocating.
I was actually relieved when the doctors finally decided he needed to be put back on the respirator. Heavily medicated, he once again looked peaceful while the machine did all the work of breathing. A follow-up X-ray showed a fluid buildup around his lungs, which prevented him from allowing air into his lungs.
Robert, my son, had just undergone open-heart surgery for the correction of a congenital heart defect. He had sustained a complication that, according to Bobby’s surgeon, 30% of pediatric open heart patients will encounter, called a chylothorax, chyle being emulsified fat, and thorax meaning chest cavity.
When we eat a meal containing fat, in this case breastmilk, the fat is picked up by our stomach, and transported up the chest wall by the lymphatic network, and transferred via a duct to the bloodstream. Once in the blood, the fat can be used as a nutrient to fill our body’s needs. In Bobby’s case, the duct had been damaged by the surgery and now the emulsified fat was dumping out of the gland and directly into the space between his lungs and his chest wall. As this space filled with fatty fluid, his lungs could not expand, resulting in respiratory distress. This necessitated the placement of chest tubes to alleviate the pressure and fluid buildup. In my son’s case, it bought him two more months on a respirator.
The usual treatment for a chylothorax is to keep the patient without any food to the stomach for a time, hoping that an empty stomach will allow the gland to heal. He was given a form of food through his veins known as TPN (total parenteral nutrition), but it is inferior to any oral food. It was the best “Modern Medicine” could do. Surgical repair is impossible, as the gland is the size of a strand of hair and could not be visualized. So Bobby was kept NPO (no food by mouth) for two weeks, but the drainage did not subside.
Next strategy was to implement Portagen, a specialized formula which consisted of 15% long chain fatty acids, as opposed to breastmilk which has 40%. (This is why breastmilk is superior for brain development.) For the next two days, Bobby was given Portagen via a tube placed in his nose into his stomach; but instead if subsiding, the drainage increased. So back to NPO.
Bobby was draining as much as half a liter (16oz) out of the chest tube daily, which is a tremendous amount of fluid for an 8 lb. baby. This fluid was full of lymphatic cells, which are rich in infection-fighting antibodies; and losing this fluid resulted in his getting repeated blood infections. Ironically, the one with the highest mortality was the yeast infection, which came from his empty stomach and leached into his blood stream.
Etched in my mind forever will be the day I was at my son’s bedside during a routine dressing change of one of his four chest tubes. When the nurse unveiled the area, I was appalled to see a half dollar sized crater had formed around the dime sized chest tube, a sure sign that nutrition was inadequate at best. Skin health is one of the most accurate indicators of nutritional status. Though I knew physical touch was vital in this situation, I was discouraged from holding my child in my arms because the sutures which held the chest tubes in place just pulled out, as if they had been sewn into butter. The breathing tube, which barely rested against his lips and chin, had a large bruise shadowing underneath. I had always prided myself on my bouncy, robust, healthy, pink babies, due largely to my breastmilk. And here was my son, my beautiful breastfed baby boy, literally starving to death. The essence of his life was draining out the tubes.
The physician in charge of the pediatric intensive care unit, Dr George Lister, was brought into the case and spoke to us about the need for Bobby’s nutrition to be maximized. He explained to us that we were in a “Catch-22.” If Bobby continued to drain the amount of nutrients at his present rate, he would not have the nutrients he needed to heal the gland. But if the gland did not heal, he would continue to drain the needed nutrients. He made nutrition an absolute priority and fortified the nutritional components in the TPN as high as he could safely go. Ideally we needed a fat-free form of food for his stomach, but there was nothing available.
During that time I continued to pump and freeze my milk, praying for the day he would be able to receive it. Pump, freeze, wait. Pump, freeze, wait. After weeks of drainage and no food by mouth, Bobby’s condition was deteriorating rapidly. John and I decided if we wanted to have our son come homes alive, we had to take the matter into our own hands and do more than “Modern Medicine” could do. Time was of the essence.
While the medical team was trying these interventions, my husband John and I had already begun tapping into our LLL network for possible solutions. We received a short article from the Area Professional Liaison, Sue Iwinski, that told of a mother in 1995 in a similar situation who had made skim breastmilk for her baby in Alabama. It listed all the names of the people who helped. At this point, we gave the article to Barb Ackerman, who in turn gave the vital assignment of contacting these people to lactation consultant Sharon Joslin, also of Yale. Disappointment was followed by hope when we found out all the people involved had left the University of Alabama Medical Center, but the new lactation consultant knew Connie Brookwood, original LC, and could give us a way to find her. Sharon and Connie then discussed the specifics of what needed to be done, and passed the information on to John who would actually do it.
The milk needed to be spun in a centrifuge at a specific force of gravity over a specific amount of time. The only problem was that we did not own a centrifuge, and we could not use the centrifuges at Yale. Centrifuges were normally used to spin “blood and body fluids,” so whatever milk we would spin in these would not be fit for human consumption. John would not be deterred. If necessity is the mother of invention, then desperation is the father of creativity. John spun it in our own Maytag washing machine.
His first attempt to centrifuge the milk was to tape full bottles the inside of the washer drum and put it on the spin cycle. Only problem was the fat went to one side, while the skim to the other, and there was no way to separate it out. Next he tried drilling some holes in pine boards and inserting them into the washer, which allowed tubes of milk to sit at the correct angle. This method allowed the separate components to drain.
When John wasn’t busy finding a way to spin the milk, he and Sharon Joslin were searching the hospital supply rooms for ideas to aspirate (pull) the fat out of the milk, while leaving the skim behind. Bonnie King, a researcher at Yale, happened to be conducting work on the potential use of breastmilk cells as a means of detecting early stages of breast cancer. She had experience with the properties of breastmilk, and after much trial and error, the three comrades were able to find a device and method that would fit our needs. Their tireless efforts were spurred on by the ultimate goal of saving a baby’s life.
I was now in charge of finding somewhere the milk could be tested. Yale’s labs were not capable of analyzing milk components accurately, but Dr. Lister required proof that we had fat- free milk before he would allow its use. I called local health food stores, which finally led me to Organic Valley Farm, an organic dairy farm. They explained that they sent their milk samples to a lab in Berlin CT called Northeast Labs. I left a message for someone to please call John at the hospital.
Dr. Alan Johnson, director of Northeast labs, called John and explained that the test we needed was called a Babcock butterfat test. After hearing the situation, he told John to bring the samples as quickly as possible to the lab and he committed to having the results faxed to the hospital within hours of receiving the needed samples.
John had supplied Yale’s labs with skim milk samples a few days before, and although results were not specific enough for our needs, they did show that even the “Maytag” sample had a lower fat content than whole milk or Portagen. But John knew we could get fat-free results with the correct equipment.
The skim milk idea was now going to become reality. The biggest problem was Yale did not have an area or a centrifuge to produce skim milk. So John went to the Internet, found Labnetlink.com, purchased a lab quality centrifuge, and had it delivered to the house the next day. He set up a lab area in our computer room and ran the first batch of skim milk.
John made five samples of milk that day: whole breast milk, breast milk aspirated after it was left to stand for 48 hours and naturally separated, milk spun in the Maytag washer and two centrifuge samples. As promised, the results were faxed to the PICU. It showed that the centrifuged milk was the best by far with .02% fat per 100 cc of skim milk.
We finally had “fat-free” milk.
We talked with the doctors and gave our son every ounce of our healing energy during the day, and then took turns making the skim milk by night. I pumped, John spun. I spun, John delivered. Each day we brought in a fresh batch of milk.
About this same time, the medical team was doing research of their own, and found there had been success in treating chylothoraxes with a drug called Octreotide, which slows the absorption of food from the stomach. The drug is a synthetic form of a hormone in our blood called Somatistatin. The drug was originally intended for use in people with persistent diarrhea from chemotherapy, but it had been used only once before in treating a baby after open-heart surgery. It was worth a try. Months later, we discovered that breastmilk contains 4 times more somatistatin than our blood. My skim milk was started, slowly at first. We all held our breath as we watched the chest tubes, hour after hour, for a change in the drainage. To our relief, it did not turn a whitish color, nor did the drainage begin to increase. In fact, it started to subside. We slowly increased the amount of milk he was receiving, and by the end of the week, Bobby was receiving full feeds of one ounce (30 cc) per hour. When he could tolerate it, the milk was then fortified with protein and carbohydrate supplements. MCT (medium-chain-triglyceride) oil was added to increase the caloric content of the skim milk, and the essential fatty acids were supplemented by adding a small amount of Evening Primrose oil.
Bobby began to thrive. The infections subsided, his skin began to heal, the bruise from the breathing tube faded away, and his vital signs improved. Two months after his surgery, Bobby finally came off the respirator. There was not a doctor at that hospital who would have denied the breastmilk saved his life, and several doctors bluntly told us just that. Bobby became quite popular, as he was “shown off” to visiting doctors, specialists, and other lactation consultants. One of the nurses jokingly said one day, “You know, I’ve given all kinds of medications in all kinds of doses, and it doesn’t phase me at all. But when I pick up this milk, knowing all that went into making it, I shake and just pray I won’t drop the bottle.”
After 3 months in intensive care, Bobby finally came home. Initially he continued on the skim milk, but after about a month, he had trouble gaining weight. We decided it was time to try full at milk again, which we again introduced very slowly. At first, to every 100cc skim milk, we would add 10cc whole milk. 3 days later we increased it to a ratio of 80 to 20, all the while staying keenly alert to his effort in breathing.
A month later, Bobby was receiving full fat milk. I remember thinking how satisfying it was to see his feeding tube an opaque white color instead of the transparent, watery hue it showed with the skim milk. We are now doing the whole process backwards, and feeding the cream to Bobby at night to boost his caloric content. He is gaining weight beautifully and increasing his strength.
Unfortunately, though he could now receive whole milk into his stomach and would have been able to nurse once again, he will now no longer suck. Bobby had experienced so many invasive procedures in his mouth, his body moved the gag reflex from the normal position on the back of his tongue, to the front of his mouth. He developed an oral aversion because his mouth did not feel safe to Even light touch on his cheeks would result in him screaming, turning blue, and throwing up. Not exactly the warm fuzzies I was used to with laughing eyes and contented gurgles from a satiated breastfed baby.
At present, with the help of weekly visits to a lactation consultant, I am now able to put my nipple or finger in his mouth, just past his lips. He licks the dripping milk from my breast, and it leaves us both feeling hopeful, as we joyfully anticipate the day he will latch on and suck the food he was meant to have, the way he was meant to have it. I will never again take for granted nursing a child. I now have seen the true benefits of a human baby receiving human milk, and I know that Bobby had served as an instrument for the medical community to witness that as well.
We now hope those words, “Your baby cannot have your breastmilk,”
will be followed by knowledgeable health professionals saying, “But there
may be another way.”
Butgereit, B. Giving Breastfeeding a New Spin. Birmingham
News, 1995. Sept. 23, 1995
Reprinted Eastern US Professional Liaison ADVISORY, Vol. VII, No. 6, Nov.-Dec., 1995
Rimensberger, P., Muller-Schenker B, et al. Treatment of a Persistant Chylothorax with Somatostatin. Ann. Thorac Surgery 1998: 253-54
Al-Tawil, K., Ahmed, G., et al. Congenital Chylothorax. American Journal of Perinatology, 2000: 17 3 121-122
Kelly, R., Shumway, S. Conservative Management of Postoperative Chylothorax Using Somatostatin. Ann Thorac Surgery 2000:69 1944-5
*~* Trish Whitehouse is the mother of four children, Hannah 10, Nathan 7, Carrie 3 and Bobby 1 year old. She lives in Southbury CT with her husband John. She is a RN who, when working outside the home, was a cardiac rehabilitation nurse. She has been a La Leche League leader for the past seven years.
Copyright 2003 by Trish Whitehouse
to the Contest Page
Back to the Home Page