No one told me I couldn’t: my nursing story

A warm Sabaidee and welcome to Carnival of Breastfeeding readers! Thanks for coming over!
(Regular Navagating readers-this is a little different than my normal posts. Its an essay I wrote for a blog carnival on breastfeeding and special needs. Hope you like it all the same!)

I nursed for the first time shortly after my beautiful daughter was placed on my chest after a very quick and fairly easy natural birth. I’d had an easy pregnancy too (my GP pronounced me the Easiest Pregnant Lady Ever). It wasn’t until 9 days after that that we were told our daughter Nava had Down syndrome. 

First feeds
As I tried to process the news, I read and read, including about feeding problems in babies with Down syndrome. Nava had taken to nursing well, gaining right after birth though failed to put on as much as they wanted by 7 days old. She took a very long time to eat, about 45 min a time, so I worried she wasn’t getting full and she didn’t wake up to eat some nights and it was impossible to wake her to feed.
Searching online I found reference to a booklet by LLL Australia on nursing a child with T21, which you had to request to be mailed to you. I remember it struck me as laughably archaic that the only publication written specifically for my breastfeeding situation was so obscure you could only get in hard copy through the post, internationally. Surrounded by depressing information I decided to focus on what I did have: a daughter who could nurse (albeit slowly) and the warm support of a few doulas I’d made friends with in pregnancy. They watched me feed Nava and reassured me everything looked fine. This quelled my doubts and convinced me that her special status didn’t affect her feeding habits much.

Weight gain anxiety
Since Nava was full term and only had mild problems from low tone she could nurse okay. But only just okay, never well. I continued to read books and watched videos of correct latch and eventually started doing breast compression to help get milk into her. Her gain continued to slow and it was hard to know if it was due to the genetic implications of Down syndrome on growth (nothing I can do about it) or that she wasn’t getting enough milk (should I pump more or supplement?).  I started pumping at 2 months and turned out to be one of those women who couldn’t pump much. I went back to work part time at 3 months and between 3 and 4 months she barely gained weight and I got nervous. Our GP made faces when she saw her weight but continued to support exclusive breastfeeding. But after a month without noticeable weight increase I didn’t feel like I could keep waiting for her to grow. I finally decided to try one formula feed a day. I was still committed to breast feeding and was scared this would start the slide into less supply but my other fears won out.  She took it well but I hated giving it to her. I read sites saying I might as well give her solids rather than formula and soon started debating that course and experimented with baby cereal (I’d read so much about babies with Down syndrome not being able to eat solids well either I actually wanted to try to just to see if that was a whole new issue I was going to have to address but as it turned out she didn’t have difficulty). By 5 months, after 30 bottles of formula she finally started gaining and hit the 5 kilo mark. I slowly started to resign myself to formula feeding (pumping was getting harder and harder) and even ordered a case of it for our upcoming trip to the US. But I wasn’t ready to give up yet.

One of the advantages of living in an underdeveloped country is prescriptions are unnecessary. If a drug is available, anyone can buy it! So when an Australian friend mentioned she had taken domperidone for her daughter who had Failure to Thrive I knew I could try one more thing before embracing formula. I bought a 2 month supply over the counter just as I took off work for a month, looking forward to being with her all day rather than at work pumping.
The drug coupled with being together all the time worked. My supply shot up and after a month Nava was refusing formula and bottles. She only wanted to nurse. I could finally relax and enjoy nursing her without worries that she was still hungry or unable to grow. I gained confidence as a mother and felt I could stop worrying about her weight and growth for the very first time. I’d always liked breastfeeding but the relief finally knowing what it was like to feed without worry was indescribable.

Back to Work
Eventually though annual leave and maternity leave were exhausted and I had to go back to work full time (way way WAY later than if I’d been living in the US. Thank you progressive labor law in the poor ‘backwards’ country I live in). But by then Nava was 8 months old, she had grown significantly and way above average for a child with Down syndrome and had proven herself quite the solid food connoisseur. And more importantly, I had grown in confidence as a mom and felt confident in my ability to find solutions and make the right decisions for her. I decided to slowly quit taking Domperidone and let my supply do its own thing. I went back to work and quickly remembered how much I hated pumping but kept at it another month until we had a week off at Christmas. With the arrival of the New Year, I had a healthy, chubby 9 month old and I gave myself permission to stop pumping. I still nursed her every morning and night and whenever she wanted on weekends. The arrangement left me looking forward to nursing and snuggling her without the negativity I felt about my pump and the dismal amount of milk in the fridge each morning.

In the end
I planned to nurse Nava indefinitely. I could see myself nursing a two-year old easily. But Nava had other plans. Around 10 months, we finally had our first appointment with a speech therapist. She urged me to switch to Playtex nursers (the bottles with the plastic bag inside).  I’d read many times that they were better for oral motor development but thought the ones we were using were pretty good already. Nava seemed a great drinker to me and didn’t relish trying to import bottles and bags. But I sucked up my lazy gene and we made the switch. After just a week, there was an obvious change-her suck had grown so much stronger! It slowly started to dawn on me that despite the positive medical evaluations, she HAD had problems nursing. My supply issues made a lot more sense given a baby with a weak suck and I started to re-examine my assumptions about what had been going on in those first months nursing.

At a year old we went on another long trip and I was looking forward to a bump in my supply and nursing more frequently. It didn’t happen. Her attraction for solid food increased by the day and she made the switch to cow milk but her affinity for boobs dwindled.  While we were traveling, Dad was putting her to bed more and more and soon we were down to just a morning nursing session-our morning cuddle in bed together I loved so much. I could see the end was coming and tried to brace myself for it.

By 14 months old, nursing was over.  She just wasn’t interested anymore. I am so grateful that Down syndrome for us did not mean an NICU stay and tricky feeding issues. Instead we got to enjoy nursing. Occasionally my 20/20 hindsight about things I could have done better or help I could have gotten earlier can be painful but I still take a great feeling of accomplishment from nursing as long as we did, with the issues we faced, living in a place as lacking in services as we do. I am so grateful that Nava’s T21 wasn’t diagnosed until after her birth. Because of the “oversight” I got to deliver naturally and immediately have skin-to-skin contact. I have no doubt that a prenatal diagnosis would have meant a medicalized birth and robbed us of those beautiful calm moments when we first met.

It has now been two months since she stopped and some mornings I still wish we could go back to that wonderful feeling of cradling a small nursing baby. But instead I’m raising a toddler now. When faced with my nipple a few mornings ago, Nava got a little grin on her face, leaned in close, and gave it a kiss. 

As a reward for reading this far...here's a few outtakes of Nava's 3 month photoshoot!

can you see how hard I was concentrating on her latch?

she's on by this point and I'm happy
This essay is a part of a blog carnival on breastfeeding and special needs. Check out other posts on the subject are up at:

Go check them out-right after you leave me a comment ;)


  1. Aww... those photos were so sweet! Your memory bowls me over. I can't remember very much at all from the early period - other than what a struggle it was. Right now, Moxie's 14 months, still only wanting boob (she shakes and starts yelping when she gets into nursing position). I'm really trying to introduce cow's milk...how did you do it?
    Moxie DOES like table food, too. Whew.
    What a great post - this is going to be a fantastic one to link to for new moms.
    Thank you!

  2. The title of your post kind of says it all. Nobody ever told me I couldn't do it either - I just did. I wish the medical community would give mothers of children with special needs a chance to TRY, rather than leaping in and naysaying from the start. Your story is wonderful and you rock! :)

  3. Anonymous19.7.11

    This is a lovely story. Thank you for sharing it!

  4. Beautiful!!! What a loving devoted mama you are. Thanks for sharing your story.

  5. Bravo! Well done for going for it - I didn't know my son had a cleft palate until he was 10 weeks old and no-one had told me either so we kept on trying, topping up with expressed milk. By 4/5 months were finally nursing 'normally', or that's what I thought until after his surgery to close the hole when I discovered what a proper latch with negative pressure was supposed to feel like! Still going strong at 21 months!

  6. Thank you so much for sharing! We need all the stories from the ground we can get about breastfeeding children with DS. Not to mention the adorable pictures at the end.

    I had a mama with very similar challenges (oh the things we tried to create a successful breastfeeding relationship between her and her son with DS!). It's incredibly inspiring to me as a birth worker to read success stories like yours where things went for the most part smoothly (14 months!?!? Way to go! Many parents of typical children don't make it to 14 months).

  7. Absolutely beautiful story...Thanks for sharing this wonderful journey with us. Peace be with you always!

  8. What a great story - thanks for sharing.

  9. One of the links leads to a porn site: Blacktating: In A World of Uncertainty, Boobs Are Certain

  10. Thank you-taking it down now. That fabulous site has lost its url I guess. It can now be followed at http://blacktating.blogspot.com


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