Prader willi

Survive or Thrive

The first time you meet your child is one of the best moments in life. So new, so naive, vulnerable, and reliant on innate instincts of the human condition. You would think motherhood would come naturally. You would think breastfeeding and understanding your babies every little noise would be instinct. If you’re a mother, you know this to be false.

Every child is different. I have two boys who came bursting into the world with personality and loud voices to tell me exactly what they needed. They were hungry for life. They were hungry for the world to be explored. Elsa came into the world quiet, subdued. She could barely take her first breath without assistance. She was too weak to cry, too weak to suck, too weak to tell me her needs. A doctor once told me an infant with prader-willi lacks survival skills and that was Elsa.

Back in my home it was a constant struggle to feed Elsa. Every three hours we would wake her small limp frame of 5lbs 15oz to force in her 50ml of pumped breast milk. She would barely open her eyes. She did not search for the bottle. Her small hands did not reach out in loving adoration of my touch. David and I had our techniques and skills of physical therapy to help her feed. We hold her chin and cheeks just right to increase sucking. We would stroke her neck to prompt swallowing. Tapping her bottle would promote her suck reflex. We would stimulate her with cold rags and deep massage to keep her awake. After 30 to 45 minutes she finishes a bottle and she was exhausted.


I was referred to a lactation consultant for frequent weight checks and assistance with nursing. In the hospital I had a nurse try to assist me. I hated it. It was much easier with my boys who wanted to eat. They were starving from the beginning of life and have never let up! I nursed both of them for over a year. This time was so different. Elsa needed us to open her mouth for her. Even with milk dripping into her mouth she would not suck. I knew she was too weak to breastfeed. Once the nurse saw how weak and tired she was she told me I was right. My instinct with Elsa was right, yet again. I knew she would need to be bottle fed and I was very okay with that reality.

Every visit to the lactation consultant was dreaded. I knew Elsa needed to be bottle fed for her survival. She didn’t have a voice so I had to be that for her. We tried different holds. We tried a nipple shield. We tried a syringe drip on the nipple. She did nothing. She needed me to facilitate her suck. She needed me to facilitate her swallow. She lacked the coordination and motor control and patterns of suck, swallow, breath. She needed me to teach her how to eat. This was not going to be accomplished by breastfeeding.

After three visits with the lactation consultant and returning home to my husband in tears of frustration and feeling like I failed, I finally became bold. I told nurse I did not want to breastfeed. I told her I wanted to bottle feed Elsa and I was okay with this reality. I would continue to pump due to an overproduction of milk and wean from pumping after a month. I had painful plugged milk ducts every other day. I slept with pillows under my arms due to the pain. I took hot showers with deep painful massage over my breast each night. I would pump every three hours just to relieve the discomfort. I was so tired. It took over an hour to pump and feed Elsa. If not for my husband’s paternity leave I really think I would have had a mental breakdown.

I had eight gallon-sized bags of stored breast milk in the freezer by month one. From frequent travels with Elsa and stress I began to wean from pumping. After using my freezer supply, Elsa began drinking 24 kcal formula. I am so happy and relieved she is growing, not just surviving but thriving.

Breastfeeding is one of those hot topics in current affairs. Maybe because of the politics or maybe because of the push in our culture to be “all natural, clean-eating, and chemical and additive free”. I can’t tell you how ridiculous and frustrating this topic has become for a mother who has breastfed two children and bottle feeds another. We have all forgotten the purpose of breastfeeding. Is it not to sustain an infant’s life? Is it not to give our helpless and fully dependent child the food they need for survival? If one cannot produce breast milk, if one’s child cannot latch with a sufficient suck, what difference does it make if the child is breastfed? The real concern should be giving an infant food for survival. If that nourishment is from formula, then that infant will continue to thrive.


Sure there is mom guilt. There is pressure from society and I know people look at me with a question in their head when they see a bottle. At this point I have learned to ignore them. I have learned that my daughter is growing and happy no matter what way she puts food in her stomach. I have also learned that I am in a better mental state not pumping daily. I am free throughout my day to enjoy my daughter. I can cuddle and play with her after she eats instead of pumping for 20 minutes. I have time to play superheroes with my sons. I can sleep for a five-hour stretch at night and partner with my husband to feed Elsa.

Not everything about motherhood is natural or instinct. Sometimes things don’t go as you planned. Mothers and infants need to learn from each other. Just as any relationship develops so does the relationship between a mother and infant. It takes time and it takes persistence.


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