Bobby’s Dairy: Nursing a Baby with Chylothorax
Trish Whitehouse
Southbury CT USA
From: LEAVEN, Vol. 39 No. 2, April-May 2003, pp. 27-30.
"Your baby cannot have
your milk.” The words shot through me like a bolt of lightning.
I looked into the 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 mind went blank, and then
raced with denial. As a La Leche League Leader, countless times I’d
heard distraught mothers say their babies couldn’t have their milk.
Most of the reasons were due to misinformation and were situations where
premature weaning could easily have been avoided. So the statement “Your
baby cannot have your milk” was familiar to me. But somehow I knew
this time it was really true.
The doctor went on to explain
that my three-month-old son was experiencing a complication from his
open-heart surgery to correct a congenital defect. His lymphatic system
had been damaged, so his body was unable to deliver fat to his bloodstream
correctly. Instead, fat was accumulating in his chest cavity. The doctor
showed me a white drainage in the tubes coming from my son’s chest.
He said it was called “chyle” and was a form of fat.
I have nursed three children
well past toddlerhood. None of them needed it as much as this one. He
was septic, meaning he had a blood infection. I was sure the antibodies
in my milk would pull him through. Now, a life threatening septic blood
infection seemed insignificant in the face of not being able to nurse
my baby.
Barbara Ackerman, RN, IBCLC
at Yale New Haven hospital, came to support me, but she could only try
to soften the blow by telling me that it was temporary, that the damage
would heal, and that sometimes they can feed babies special formula
mixed with a little bit of human milk.
My son, Bobby, had sustained a complication that, according to his surgeon,
affects 30 percent of pediatric open-heart patients; the condition is
chylothorax, from “chyle,” which means emulsified fat, and
“thorax,” which means chest cavity.
When a healthy person eats
a meal containing fat, the fat is picked up by the stomach, transported
up the chest wall by the lymphatic network, and transferred via a vessel
to the bloodstream. Once in the blood, the fat can be used as a nutrient
to fill the body’s needs. In Bobby’s case, the vessel had
been damaged by the surgery and now the emulsified fat was dumping out
of the vessel and accumulating in 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 made it necessary to
use chest tubes to alleviate the pressure and fluid build-up. In my
son’s case, this resulted in two more months on a respirator.
I knew something was wrong
before the doctor made his pronouncement. I had held Bobby in my arms.
It was five days after the surgery. 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. As the day progressed, however, the feeling of peace
I had in the morning gave way to worry, anxiety, and finally terror.
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 from the effort. His chest
muscles heaved, showing 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 into mine
as if to say, “I don’t know how much longer I can do this,
Mom. Make it stop.” 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 the fluid build-up
around his lungs, which prevented air from getting to his lungs.
The usual treatment for chylothorax
is to give the patient no food by mouth (NPO) for a time, hoping that
an empty stomach will allow the vessel to heal. He was given nutrients
through his veins known as TPN (total parenteral nutrition). It is inferior
to any oral food, but was the best they could do. Surgical repair is
impossible at this time, as the vessel is the size of a strand of hair.
Bobby was kept NPO for two weeks, but the drainage did not subside.
The next strategy was to
feed him Portagen by mouth, a specialized formula that consists of 15
percent long chain fatty acids. I knew that human milk has 40 percent
long chain fatty acids and because of that, we didn’t think there
was any way to use my milk. For the next two days, Bobby was given Portagen
via a tube placed through his nose and into his stomach, but the drainage
increased, so he was switched back to TPN.
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 that a 2 inch (5 centimeter) crater had formed
around the half inch (2 centimeter) chest tube, a sure sign that the
nutrients he was absorbing were not adequate. Skin health is considered
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, often tore through his fragile skin as if they had been
sewn into butter. The breathing tube, which barely rested against his
lips and chin, had caused a large bruise underneath. I thought of my
other, healthy robust breastfed babies, and here was my son, my beautiful
breastfed baby boy, literally starving to death. It seemed as if 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 tough situation.
If Bobby continued to drain the amount of nutrients at his present rate,
he would not have the nutrients he needed to heal the duct. But if the
duct did not heal, he would continue to drain the needed nutrients.
The doctor made nutrition an absolute priority and fortified the nutritional
components in the TPN as high as safely possible. Ideally we needed
a fat-free form of food for Bobby’s 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, and wait was my daily routine. After weeks
of drainage and no food by mouth, Bobby’s condition was deteriorating
rapidly. John and I decided that if we wanted our son to come home alive,
we had to take the matter into our own hands.
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 LLL Area Professional Liaison, Sue Iwinski, that told
of a mother in 1995 who had been in a similar situation who made skimmed
human milk for her baby in Alabama, USA. It listed all the names of
the people who helped. Sharon Joslin, APRN, CNS, IBCLC, NNP also of
Yale New Haven Hospital, attempted to contact those involved. Unfortunately,
we found out all the people involved had left the University of Alabama
Medical Center, but we were able to locate Connie Carlisle (who is an
RN, BSN, and IBCLC), the original lactation consultant. Sharon and Connie
discussed the specifics of what needed to be done, and passed the information
on to my husband, 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 New Haven Hospital. Centrifuges
were normally used to spin “blood and body fluids,” so whatever
human 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 top-loading
automatic washing machine.
His first attempt to centrifuge
the milk was to tape full bottles along the inside of the washer drum
and put it on the spin cycle. However, while the fat went to one side
of the bottle and the skimmed to the other, there was no way to drain
the skim from the cream when the washer stopped. Next he tried drilling
some holes in pine boards and inserting them into the washer. This positioned
the tubes of milk at an angle so the components would separate—fat
to one end, skimmed to the other—and could be carefully poured
into separate containers when removed from the washer.
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
the hospital, happened to be conducting work on the potential use of
human milk cells as a means of detecting early stages of breast cancer.
She had experience with the physical properties of human milk, and after
much trial and error, the three comrades were able to find a device
and method that would fit our needs.
I was now in charge of finding
a place where the milk could be tested. The research hospital labs were
not capable of analyzing milk components accurately, and 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, Connecticut, USA, called Northeast Labs.
Dr. Alan Johnson, Director
of Northeast Labs, 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.
The skim milk idea was now
going to become reality. The biggest problem was the hospital 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
washer, and two centrifuge samples. As promised, the results were faxed
to the pediatric intensive care unit. It showed that the centrifuged
milk was the best by far with .02 percent 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 chylothorax conditions 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 only been used once before in treating a baby after open-heart
surgery. It was worth a try. Months later, we discovered that human
milk contains a high level of somatistatin—four times more than
human 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
Bobby 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 skim 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. All the doctors at the
hospital eventually realized that my milk saved Bobby’s life. 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 disturb 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 three 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 fat human milk again, which we introduced very
slowly. At first, to every 100cc skim milk, we would add 10cc whole
milk. Three days later we increased it to a ratio of 80cc to 20cc, all
the while staying keenly alert to his effort in breathing.
A month later, Bobby was
receiving full fat human 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 then did the whole process
backwards, and fed the cream to Bobby at night to boost his caloric
content. He was able to gain weight beautifully and increased his strength.
Unfortunately, though he
could now receive whole milk into his stomach and would have been able
to nurse once again, he would 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. 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.
The first breakthrough to
the oral aversion was being able to put my finger or nipple in his mouth,
just past his lips. He would lick the dripping milk from my breast,
and it left us both feeling hopeful as we joyfully anticipated the day
he would 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 has served as an instrument for the medical
community to witness that as well.
We now hope that when other mothers hear the words, “Your baby
cannot have your milk,” they will be receiving care from a knowledgeable
health care provider who also says, “But there may be another way.”
Editor’s note:
Trish has continued to pump. Bobby still receives her milk by cup or
occasionally by bottle. Trish has been told by his doctors that human
milk is the reason Bobby has been able to avoid being readmitted to
the hospital.
Making Human Skim Milk
1. The whole human milk
is placed into tubes that have outlets at the base.
2. The tubes are placed in the centrifuge.
3. The milk is centrifuged for six minutes at 1.03Gs to obtain the required
force to separate the milk parts. (The centrifuge used determines the
RPMs per the manufacturer’s recommendations.)
4. When the centrifuge opens, the tubes of separated milk are gently
taken from the centrifuge.
5. The “skim” milk can be removed from the tube. The end cap
at the base of the tube is removed allowing for the “skim”
milk to flow out. As the “fat” layer gets near the tube exit
port the flow is stopped. The remaining “fat” layer from the
tube is put into another container for use later.
For more information on making human skim milk, you can contact John
Zabarsky at 203-262-1154 or by writing to Chester2001 at earthlink.net
(email).
Trish Whitehouse is the
mother of four children: Hannah, 12; Nathan, 9; Carrie, 6; and Bobby,
3. She lives in Southbury, Connecticut, USA, with her children and husband,
John. She is a registered nurse who, when working outside the home,
was a cardiac rehabilitation nurse. She has been a La Leche League Leader
for the past 10 years. Trish’s hobbies include writing, swimming,
and obedience training her Golden Retriever dog, Canyon. Patty Spanjer
is the Contributing Editor for feature articles in Leaven.
Last updated 12/29/06 by jlm.
Page last edited Sun Oct 14 09:31:53 UTC 2007.
