You will be forgiven for wondering why a mother would breastfeed through pain, for months on end. After all, the common adage is that, “If it hurts, you’re doing it wrong”. Pain is the result of poor latch or a treatable infection right? There is no need for a mother to endure months of pain.
But what if your baby has a rare chromosomal defect which means that feeding problems are inevitable and pain is part of the game. How do you summon up the courage to go on? This is Darby’s story.
“I know there is a time and a place for formula but sometimes I am a judgy mom. I jumped through hoops to breastfeed. I had lactation consultants scratching their heads, I shed more tears than I can count. Lets go back.
6 weeks of finger feeding
When we had our first daughter I was an inexperienced new mom at 26. Our daughter did not take to breastfeeding and the initial 6 weeks were hard work. I finger fed and pumped around the clock until one day I pulled up my shirt and she latched like an expert. It was wonderful. She nursed for 14 months. I thought that was a struggle… nope.
Our second daughter was an expert right away. I think as an experienced mom it helped a little too…I nursed her for 22 months. We were done having kids…
Then 8 years later….I found out what a breastfeeding struggle really was.
Our next daughter came along, born at home and latched right away. However she lost weight fast and kept loosing. The midwife checked her at a week and we heard a heart murmur. This was a whole other struggle but we later found out our daughter had 22q deletion. This means she has a missing section of chromosome 22. Present in 1 out of every 2,000-4,000 live births, the condition has the potential to affect almost every system in the body and can cause a wide range of health problems including heart defects, palate differences, feeding and gastrointestinal difficulties, and growth delay (even now at 2 years old she is barely 22 pounds). So no matter how much she ate, she just didn’t pack on the weight. I nursed and I pumped so I could measure how much and when she was eating.
Somewhere in these first few weeks I started to get fissures on my nipples so bad that people would step back when they saw them. As an experienced nurser I knew my daughter was swallowing and getting lots of milk so I thought maybe it was a latch issue. Normal nursing feels like slight tugging but with no pain. I was feeling pain of a 10. I could barely bring my daughter to my breast because I knew the pain that was coming. Sometimes she would scream because I just couldn’t do it. I would cry and cry and say, “I just can’t do it.” It just hurt too much. In an attempt to stimulate letdown my daughter would chew my nipple and pull and it was excruciating. I literally had open wounds on both nipples. One hurt less than the other so I would be happy when it was that sides turn.
I set up a chair in my bedroom so my other kids wouldn’t see me crying when I fed my daughter. My oldest who was 11 at the time was starting to think breastfeeding hurt and had a look of fear about her future. I made it clear to her that this wasn’t normal. There should be no pain. I sought help from lactation consultants and they just said I was doing it right and they were at a loss. Even the La Leche leauge couldn’t help and I was a mess. I wept constantly because I now had a baby who had health issues, was so tiny and looked hungry (even though she chugged her milk and was getting plenty) and I literally panicked when it was time for a feed. Now I know that everything was down to 22q deletion syndrome. Her palate malformation was causing the pain, and her growth delay was a normal part of the syndrome.
Despite this, I never gave up. I almost marched out the door to get formula and bottles but I resisted. My baby needed the closeness and the nutrition, so I stuck to it. Even when she went to the hospital at 7 months for her open heart surgery I pumped so I could keep up my milk supply. The best moment ever was when she latched on for the first time after her surgery with a cuddle.
However there was still pain. To make matters worse I had thrush over and over and my nipples pealed. I tried various thrush creams and medicines. I even tried gentian violet a couple of times! (What a mess that makes!) No matter what treatment I tried, the pain remained. I always had sharp or throbbing pain during and after feeds. Yet I didn’t stop and neither did the pain until my daughter stopped nursing at 22 months. A month later, my next baby arrived!
Nursing Through Pregnancy
Nursing through pregnancy was interesting. My daughter had to get used to being kicked when she fed!Also because of my growing belly, positioning got tricky and night times were exhausting. Even though my daughter was a toddler she was still waking to feed up to 5 times a night!! When she finally weaned, I put a sippy cup and water in her bed with her.
I delivered our son at home. At an hour old he latched on and it was heaven. No pain. I was thinking, this is how it is supposed to feel! He is 4 months now and feeding is going great and he is growing like a weed. My daughter even comes over to us while he is feeding and squeezes my breast to help. When she encountered a toy bottle for a doll she was clueless as to what it was!!
I know there are times when formula is the only way but I am so glad I stuck it out. My son can nurse until he is ready to stop.”
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