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."