This guest blog post came to me by way of the Twin Cities Attachment Parenting International (API) mailing list, as a thank-you letter to the moms who donated milk several years ago to a boy named Caleb. Caleb was born with trisomy 13 and his dedicated mama, Perla, pumped milk for him for five months, and then turned to others to help provide more breastmilk. Caleb is now three years old and doing very well, and his mom credits breastmilk for his strong immune system. It’s such a testament to the power of community, the strength of mothers, and benefits of breastmilk that I asked permission to share it with you all.
By Perla Morley
First you find a good recipe. Then you purchase the ingredients. Once you have all you need, you get to work, and after a couple of hours, you are able to enjoy some delicious cookies, chewy or crunchy… just the way you like them.
Don’t we all wish that life happened this way? Everything as planned.
There are some people who make sure their dreams and plans happen as closely as possible to their desired time frame and specifications. I once had a co-worker so detailed and organized that even menial things were written down in her planner, for example, when to take out the trash. I am pretty sure the birth of her children exactly two years apart was not by chance. There are others, like me, who say they will do something, without really striving to accomplish anything. So you have those obsessed with planning and details, and those more laid back.
I am not a goal setter and my “dreams” have never been well defined, but there are some things I have obsessed about. Breastfeeding was one of them. Perhaps my years of miscarriages and infertility provided me with too much time to think about what I would do if I had a child. I am the kind of woman who will feel sorry for those babies whose mothers choose not to breastfeed. I remember thinking, “When I have a child I am not going to give him formula. When I have a child, I am going to breastfeed him for at least two years, which is what the World Health Organization recommends.”
I was fortunate enough to meet and surpass my expectations with my first son, Daniel. I breastfed Daniel for almost four years. Even my dad and brother, both pediatricians and strong breastfeeding supporters, thought I was overdoing it. I let Daniel wean himself (with a little help) while I was pregnant with my second son, Caleb. I will never forget the wonderful times we had together breastfeeding.
Things did not go my way with Caleb. He was born with trisomy 13, and his chances of living were slim just because of that. I tried to breastfeed him for a couple of days unsuccessfully. His jaw was small and retracted; his suck was weak. The doctors put in a feeding tube through his nose. I started pumping. Since the most important thing was to get him fed, I gave up on breastfeeding and started to bottle. All I wanted was for him not to have to be tube-fed. Breastmilk in a bottle was better than no breastmilk at all.
He required tube feedings for a few days until he managed to bottle feed well enough to remove the tube and go home. We bottle fed him his first three weeks of life, until he started having breath holding spells and apnea triggered by gastro-esophageal reflux.
That was the end of the bottle, and the comeback of the feeding tube. To this day, Caleb does not feed orally.
Pumping is so boring. I hated having to wash the pump pieces and bottles. To make matters worse, at the time of Caleb’s birth, we were housing a family of three adults and two kids waiting for their house to be rehabilitated to move out. I did not have the luxury of simply setting my pump out in the living room and pumping while Daniel played there and Caleb slept, or while we all watched T.V. I had too large of an audience. I therefore stayed in the “privacy” of my room isolated from my family.
I hated pumping, but I did it for five long months, day and night, until my body and my mind could not take it any longer. I was going to give in to formula, even though I felt guilty that Caleb, who perhaps needed it the most, would not get to receive breastmilk for at least a year, the absolute minimum in my mind. I also worried that he would not tolerate formula alone. We had already been giving him the most pre-digested formula on the market, and he still had trouble with gassiness. Even though he had trouble digesting breastmilk as well, he definitely had an easier time with it.
No, things don’t always go as planned. But my dream came true.
I had never heard of breastmilk donation. I had never imagined feeding my child another woman’s milk, but I did. In fact, I fed him the milk of several different women. I don’t remember the details now, but after my co-worker’s wife posted Caleb’s story in a natural parenting group, several women replied expressing their desire to donate milk. Some of them had extra frozen milk to give away. Some were willing to pump a little extra to share with Caleb. Some of these women told other women, and they in turn offered to help. These hard-core breastfeeding mothers knew this baby needed breastmilk and they worked to make it happen.
My husband and I would make the runs to pick it up. Some milk was lighter in color; some seemed thicker than mine. When Daniel was a little over two years, he said my milk tasted like walnuts. I wonder what the flavor of those women’s milk was. It must have been sweet, the flavor of love.
I remember calling one of them once to ask if she had any milk for Caleb. “My supply has gone down,” she said. I am baking some lactation cookies right now to see if that helps.”
Lactation cookies! Who knew such a thing existed? Who knew there would be women who would care so much about my son and about breastfeeding that they would go the extra mile to pump and store, and spread the word, and bake lactation cookies to make sure there was enough?
Life did not turn out as hoped for Caleb and us. Something went wrong with the recipe. One ingredient too many—an extra chromosome—messed things up. Yet, thanks to these women, Caleb ended up having a feast. And our hearts were also filled.
Perla Morley lives in St. Louis Park with her husband Paul and their two children, Daniel (7) and Caleb (3). She started writing as a way to process her experience as a mother of a special needs child. Caleb was born on March 25, 2010, with Trisomy 13, also known as Patau Syndrome.
To read more about Caleb and our family’s story, please visit: http://www.prenatalpartnersforlife.org/Stories/Trisomy13_Caleb.htm
For more information on Trisomy 13, please visit SOFT (Support Organization for Trisomy 13, 18, and Related Disorders): http://trisomy.org/