Pure Gold
By Raia Mayor Kinnelon
New Jersey, USA
as told to Maura McCabe
Morristown, NJ, USA
From: NEW BEGINNINGS, Vol. 17 No. 4, July-August 2000, pp. 127, 144
We provide articles from our publications from previous years for reference for our Leaders and members. Readers are cautioned to remember that research and medical information change over time.
When my son, Cameron, was
due in February of 1999, I looked forward to enjoying the same delightful,
carefree days of nursing as I had with my first child. To me, breastfeeding
was the one and only natural way to care for a baby. Unfortunately,
my plans quickly fell apart within an hour after birth. While I was
still recovering, the doctors returned with the words every parent dreads
to hear, "I am sorry to have to tell you this..." They informed
me that Cameron was born with a bilateral cleft of both his hard and
soft palates. The uvula, normally located at the back of the throat,
was also missing. Despite all this, the medical staff didn't appear
too alarmed and reassured me that an operation to repair his cleft could
be performed around the age of six months. I did my best to put the
situation behind me and continued with my plans to breastfeed.
Yet problems quickly surfaced.
The nurses soon noticed that Cameron was having a difficult time taking
in fluids of any kind, either by breast or bottle. While struggling
to suck, he would tire easily and fall sound asleep before the feeding
had barely begun. At other times, fluids would leak up through his nasal
cavity as he choked and struggled to swallow. By day three engorgement
had set in, and discouragement overwhelmed me. My mothering instincts
were telling me something was terribly wrong. A social worker was called
in to ease my hysterics and furnish me with a detailed list of cleft
palate specialists, craniofacial associations, and other support contacts.
Nurses supplied me with a Haberman Feeder for cleft palate babies, while
at the same time encouraging me to continue breastfeeding.
Two days later, after being
released from the hospital, Cameron's health continued to deteriorate.
By the end of the first week, he had lost over one pound of his seven-pound,
one-ounce birth weight. He was slightly jaundiced and growing increasingly
lethargic. My efforts to nurse, pump, and then supplement were failing.
Not wanting to cause nipple confusion, I was using a syringe to feed
Cameron, which quickly proved both cumbersome and time consuming. To
complicate matters, my husband was away much of the time on business
and a parade of visitors, relatives, nurses, and social workers were
coming to see me on a daily basis. I was tired and distraught, tending
to Cameron's special needs while also caring for an active two-year-old.
I suppose you could say I was in denial, refusing to accept my child's
condition, wishing Cameron's problem would just go away. Yet daily weight
checks at the pediatrician's office confirmed my worst suspicions; Cameron
would have to be fed with a special, high-calorie formula. I was also
directed to use the Haberman Feeder given to me in the hospital. This
came as a crushing blow even though numerous health care professionals
and friends reassured me it was for the health of the baby. Why couldn't
I just "be realistic" and accept things as others had urged
me to do? Why couldn't anyone seem to understand my overriding desire
to nurse? With these questions in mind, my first contacts with La Leche
League couldn't have come at a more opportune time. From my initial
phone conversations with two local Leaders, I could immediately sense
that these were women who shared my enthusiasm for breastfeeding. Hearing
the success stories of Edith Grady (Nursing a Baby with a Cleft Lip
or Palate, No. 523-24) and other mothers in similar circumstances
lifted my spirits and gave me hope. I did my best to stay positive,
turning everything around.
I first purchased a copy
of THE WOMANLY ART OF BREASTFEEDING, a reliable source of information
I could turn to in my darkest hour. Next, I invested in a high quality
fully-automated double pump. Though expensive, it was worth every penny.
Pumping took number one priority in my life and any spare minute was
spent hooked up to my newest living room centerpiece. I set a goal of
eight milk expressions per day and began to plan my many appointments
and visits around my pumping schedule. I found milk expression to be
easiest in the mornings and would hardly ever miss one of these pumpings.
In fact, any pumpings that
were missed were dutifully made up the next day. I also began taking
Brewer's yeast and drinking as much water as possible. Yet even with
these improvements I discovered that my milk supply had significantly
diminished. In time, I was able to give Cameron at least one 8-ounce
bottle of breast milk per day. Some may wonder why I went through all
this exertion for only one bottle a day, but I knew in my heart that
this was the best thing I could be doing for my son.
Meanwhile, I still tried
putting Cameron to the breast and any suckling brought me incredible
joy. I experimented with different holds and hand positions, as well
as trying to hand express milk into his mouth. Yet as the weeks went
by Cameron became increasingly disinterested in the breast and eventually
refused to latch on at all. Though it was very depressing, I tried hard
not to take this rejection personally. With the help of my LLL Leaders
I was able to stay focused on my long-range goals.
As the summer approached
and things stabilized a bit, I decided to visit my homeland of England
and stay with my family. I packed my bags, as well as my breast pump,
and flew home. This time away gave me a chance to finally reflect upon
all the trials and triumphs of the past four months. I had to come to
terms with the fact that probably I would never be able to completely
breastfeed my child as I had so longed to do, and that was "okay."
Life goes on and breastfeeding is just one of the many wonderful facets
in the life of a mother. Being with supportive and loving family members
was a blessing that cannot be overestimated in value. Furthermore, whether
it was due to my pumping or my family's great hospitality, my milk supply
also increased. By the time I left England, I was even beginning to
store milk in the freezer!
Upon my return to the States,
all thoughts were focused on Cameron's upcoming operation. An appointment
was scheduled at Columbia Presbyterian Hospital in New York shortly
before his six-month birthday. When hospital staff first informed me
Cameron couldn't consume anything after 10 PM the night before the operation,
I quickly panicked, but imagine my delight when she told me that human
breast milk could be given up to three hours before surgery! As my husband
and I watched Cameron wheeled away the next morning, our hearts ached
with concern but little could prepare us for the extent of his palatal
surgery. Doctors determined it necessary to make an incision around
the inside of Cameron's entire gum line. With this they literally repositioned
his whole palate backwards, allowing room for future growth. A second
incision was made vertically down the center of his palate in order
to actually close off the cleft. Skin grafts were then taken from other
interior regions of his mouth to rebuild his missing uvula. When Cameron
was finally returned to us - mouth all bloody, his tongue tied down
and little arms in braces to avoid damaging the stitches - it took all
my strength to keep from sinking into the depths of despair. When physically
able, I offered him some formula which he promptly refused. I then pumped
some milk and he readily took it. Excited, I continued to pump at intervals
throughout the night. By 4 AM, worn-out and ready to give up, one of
the nurses came in and urged me on. "You just have to keep pumping,"
she said. "You know your milk is worth pure gold to him now."
That gave me exactly the right amount of motivation to persevere. By
the next afternoon, Cameron was making a remarkable recovery, sipping
down breast milk and even trying to smile. Thirty-six hours after his
operation, in less than half the expected hospital stay, Cameron was
released and sent home. I knew at that moment all my persistent efforts
at pumping had paid off.
Once home, Cameron cried
out in pain from his extensive oral surgery. Attempts to feed him with
a syringe again, as we had been instructed to do, only added to his
confusion and discomfort. My enthusiasm for pumping was quickly waning.
For a while it seemed as if things had gone from bad to worse. Yet always,
in the back of my mind, I wondered if Cameron would one day be able
to nurse. So at his postoperative checkup in early September, when the
doctor gave me the okay to feed Cameron as "any normal baby,"
I rushed home to put Cameron to the breast. He fussed and squirmed and
ultimately wanted nothing to do with it. Undaunted, I rushed out the
next day to purchase a supplemental nursing system. It turned out to
be just the stimulus Cameron needed. He latched on, finished the supplement
and then kept right on nursing! Within a week Cameron was breastfeeding
without the supplementer. With great excitement I phoned my LLL Leader
and told her the good news. Cameron's stools were changing over to the
nice "pea soup" consistency of a breastfed infant. His constant
bouts with constipation all but disappeared. For the first time since
he was born I could comfortably pull him close at night to nurse, without
having to get up, prepare formula, and undertake the painstaking task
of syringe feeding. It was a dream come true.
By now, Cameron was seven
months old and eagerly taking to solid foods. He seemed to need this
"extra" nutrition, but at least now he was developmentally
ready for them. Cameron continued to nurse for almost four months and
then decided he'd rather drink out of a cup like his big sister.
Looking back, I know my sacrifices
and struggles paid off. Cameron never once contracted an ear infection
his entire first year, something cleft palate babies are very prone
to. In fact, he had absolutely no upper respiratory infections of any
kind. His remarkable recovery after surgery impressed nurses and doctors
alike. In addition, I am sure that his time at the breast has enhanced
his jaw and facial structure, as well as his later development. Notwithstanding
all these medical achievements, I would have to say that Cameron's breastfeeding
benefited me as much as it had him. There is something indescribable
about holding your child skin to skin and nourishing him from your very
own body. I believe it is a love only fully comprehended by a nursing
mother. As someone who couldn't imagine anything other than nursing,
Cameron's time spent at the breast was to me "pure gold."
Last updated Friday, October 13, 2006 by njb.
Page last edited Sun Oct 14 09:30:18 UTC 2007.
