Breastfeeding Molly: My Special Needs Daughter
By Melissa Sokulski
Issue 112 May/June 2002
My daughter Molly was born at home, as planned, with a direct- entry midwife. Soon after the delivery, I noticed that Molly was very warm. She remained lethargic and silent and did not open her eyes. We took her temperature; her fever of 101 alarmed the midwife, who insisted we transfer Molly to a hospital. Against all my instincts, we finally agreed, taking her to the very place we had wanted so much to avoid. At the hospital, after blood draws, spinal taps, chest x-rays, an ultrasound, and a CT scan failed to identify the cause of Molly's fever, an MRI revealed that she had severe brain injury and was unable to control her body temperature.
The ten days Molly spent in the hospital were a nightmare. She was subjected to many invasive tests, had a catheter and umbilical IV, and was hooked to monitors. Pumped full of medications that knocked her out completely, she had no reflexes or brain waves. The doctors told us she would not survive and suggested we go home and get some rest. They said they would disconnect her IV and call us when she died.
But my husband, David, and I refused to give up on Molly. I wanted hers to be one of those stories you hear about, when the doctors give no hope but then are proven wrong. Day and night I sat with my daughter on my , singing to her and telling her stories. I pumped breastmilk every three hours, until the little freezer was so full of my milk that my husband had to take some of it home. I put drops of freshly pumped breastmilk into her mouth with my finger. Soon she began to suck my finger--only three or four little sucks, but here was a reflex the doctors said she would never have! Molly wouldn't demonstrate her sucking ability to a single nurse or doctor, and it was clear they did not believe me. When I told them about it, they replied, "Perhaps you didn't understand what we told you..." and then proceeded to reemphasize the hopelessness of our case.
It was easy for us to stay positive as long as we were with Molly. Her spirit was so alive, so strong. Not only would she suck my finger every now and then, but at night she would wake-not enough to open her eyes-that wouldn't come for weeks-but enough to crawl up my body from my belly until her head pressed against my chin. I'd pick her up and move her back down, and she'd make the journey again. She did the same with David. Because of this, I knew in my heart she would be okay.
Yet we were reduced to tears every time we left Molly to meet with the doctors and nurses. They sat us down and brought us back to their "reality," dismissing our questions and our hope. At one point I asked about the side effects of acyclovir, an antiviral medication Molly was on. The doctor said there were none. But when my radiologist father, who was sitting next to me, repeated the question, the doctor turned to him and answered, "It can damage the kidneys, bones, and marrow." This prompted me to get my voice back, and I demanded that they take Molly off all medications, including phenobarbital, an antiseizure medication, which they agreed to do after mistakenly giving her a near lethal ".
After nine days, we convinced the doctors to let us take Molly home. They explained that she would die unless we kept her alive artificially through a gastric tube. "And you have to think of her," they said. "What kind of life will she have? She can be no more than a vegetable." They assured us we would get into no legal trouble if we let Molly starve, since it was well documented that she would never be able to eat naturally. "Many ethical loving families," they told us repeatedly, "take their babies home and decide not to keep them alive artificially."
I knew Molly would not starve. I would drop breastmilk into her mouth all day if I had to. What else did I have to do that was more important?
The night before we left the hospital a nurse showed us how to feed her through a nasal gastric tube. Molly's first real "meal" was 8 ccs of fresh breastmilk mixed with a little thawed colostrum, or "first milk," higher in protein and immune factors. We practiced putting the tube in and feeding her every three hours all that night.
The next morning, still at the hospital, I tried unsuccessfully to get Molly to latch onto a little bottle of breastmilk. The doctors and nurses wanted one final conference with my husband and me. Handing Molly and the bottle to my cousin, an experienced mom, I asked if she would try to get Molly to take it. An hour later we returned to Molly's room. She latched onto the bottle, and we watched with amazement as she sucked the whole thing down. My high after witnessing this came crashing down soon after, when the hospital's lactation consultant handed me her card and said to call if I wanted to donate my milk after Molly died. Needless to say, it was a relief to leave one of "the best" in the world.
We never needed to use the nasal gastric tube again, but getting Molly to take her bottle proved difficult. Then it occurred to me that if she could latch onto a bottle she could latch onto my breast. I called a highly recommended lactation consultant and explained Molly's situation; I was disheartened when she said she couldn't help. By the time I called the third consultant, I had resolved not to give any details about Molly. Luckily this woman agreed to come over as soon as she could, even though I did end up telling her Molly's history. She moved Molly around and talked with her, and when she brought Molly to my breast, she immediately nursed! A sense of joy and relief flooded through me. Unfortunately, it wasn't as easy after the woman left.
Next I called a La Leche League leader. Molly seemed sleepy to her, so she talked about nursing sleepy babies. Over time we found that massage, a walk in fresh air, and cool compresses would wake Molly enough to enable her to latch on, though that might take as long as an hour. Molly's neurological impairments caused her to root away from my breast and arch back from me with incredible strength, for someone who barely moved at other times. When she finally latched on, she would nurse and sleep for another hour or so, and by then it was time to nurse again. After about six weeks of constant struggle, she got it, and it was never as difficult again.
Molly suffers from seizures, , and developmental delays. At 21 months, she still didn't sit up, crawl, respond to her name, or even cry; but she nursed like a champion and still does. She lets me know when she is hungry by opening and closing her mouth, or sucking any part of me she can get her mouth on. While nursing, she uses her hands and is more animated than at any other time. In bed at night she will even hit me if I fall asleep before she's had her fill.
Molly is a healthy baby, big and strong, and I have confidence that she will overcome all her problems, just as she learned to nurse. She is progressing steadily and takes no medications.
I have no doubt that nursing not only saved Molly's life but also vastly improves its quality. When I had no other sign of understanding, recognition, or reaction from her, I always knew she was there because of nursing. Nursing has enabled me to reach out to her, love her, and communicate with her in ways I could not have imagined. Establishing a nursing relationship with Molly has truly been the most fulfilling accomplishment of my entire life.
<="style18">Melissa Sokulski lives in Pittsburgh, Pennsylvania, with her husband, David, and Molly, now 2 1/2. Before Molly was born, Melissa was an acupuncturist and massage therapist; now she devotes her time to helping Molly reach her full potential. Molly's vision has greatly improved, her seizures come less often, and she can easily crawl on her belly down a ramp. For more information about Molly's program, brain injury, breastfeeding, and resources, see Melissa's website at www.geocities.com/melissasokulski