Breastfeeding and Down syndrome

About a month ago I worked with a baby with Down syndrome in the hospital for the first time. The family knew about baby's diagnosis in advance, and were prepared for the idea that nursing might not go quite as smoothly as with their other babies. While like many Down syndrome babies, this one appeared to have some low muscle tone, in the course of a single night we were able to transition him from finger feeding to breastfeeding with a shield to breastfeeding with no devices. It's likely that wasn't the end of their nursing story/challenges - I don't know because they were discharged the next day, and planned to follow up with LCs closer to their home - but it was really nice to see this baby getting off to a great start despite early concerns.

The Down Syndrome Pregnancy organization provides resources and support to families who have received a prenatal diagnosis of Down syndrome, and has a book called "Diagnosis to Delivery". According to their blog, the book has a whole chapter on breastfeeding, and they ask for additional stories from moms who worked on breastfeeding their babies with Down syndrome. The comments are a sampling of a huge range of experiences...from easy breastfeeding relationships, to challenges overcome both at the beginning and as breastfeeding progresses, to very significant issues that disrupted the breastfeeding relationship the mom hoped for and still grieves. There were also challenges common, although not unique, to Down syndrome infants, like cardiac concerns, prolonged NICU stays, and milk transfer/milk supply/weight gain concerns. Some excerpts:

At 3 months, she seemed to be less and less satisfied and my milk supply seemed to be going down. I did breast compressions but she then seemed to be sucking less hard and it was a downward spiral. At 4 months, I decided to supplement formula once a day.

I was then able to be prescribed Domperidone (not in USA)to improve my milk supply so at 5 months we were back to exclusive bf again and I was able to relax. She is now 6 months now, feeding great, and starting other foods.

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Once she was out of the hospital, I worked on nursing again. It wasn’t going well, so I called in a lactation consultant and she got us on the right track. We used a shield for a while so Amélie could latch on and control the flow. As her strength grew, she weaned herself off the shield. I ended up nursing her for about 21 months.

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I pumped and pumped and put her on the breast as much as I could and I still produced almost nothing. I fed her what little came out with a bottle.
On day 10 (at home) I was beyond frustrated and teary. My husband found Kellymom.com (a godsend!!) and learned about “nurse ins” — basically you get into bed, have lots of skin to skin contact with your baby and nurse and nurse and nurse for a whole weekend to get a relationship established. It was hard, but it worked! We literally didn’t leave the bed – I even got served meals there. After 2.5 days, Emlyn “got it” and my body kicked in and we nursed like champs.

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I pumped for her and she was tube fed. I still put her on the breast but the nurses convinced me that it wouldn’t work. I continued pumping for 6 months and kept tube feeding her at home with calories added.

I thought that after her heart surgery she might breastfeed but she never did. I was very upset and felt like a failure but the truth was that she got breastmilk for 6 months anyway.

I still think that if I had persevered she may have taken to it down the track. She is 5 now and wonderfully healthy and active so really it is just me second guessing my decision.

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She had an ASD and also couldn’t get her blood oxygen up. She wouldn’t nurse so on Day 3 we made the decision with her medical team to put her on a nasal feeding tube. I started pumping immediately and kept trying to nurse, but she just wouldn’t latch on and my anxiety and blood pressure went through the roof. Having nursed my older children successfully, I was very upset. She was able to get off the feeding tube by her due date and come home, but still wouldn’t nurse. So I pumped and gave her bottles eventually supplementing with formula for 6 months. Brigid never had a problem with food or formula and has been the healthiest of my 3 kids.

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When Calvin was 9 days post op, 4 months old, I put the bottles away and he has been nursing since! I weighed him before and after feedings to monitor his intake. He does not nurse as efficiently as my others. I have a blanket for drips and it takes a bit longer, but he is gaining weight and is happy.

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Ethan didn’t have any problems breastfeeding at first, but when i went back to work he had trouble switching back and forth between breast and bottle. I ended up having to stop because it became very hard on him. I pumped and fed him the breast milk strictly from the bottle but then had production problems. I breastfed my other children and think this helped (knowing how to breastfeed).

Many moms mention the importance of support from family, friends, and medical providers including nurses, pediatricians, and LCs. Any mother should try to surround herself with knowledgeable support, but it is particularly important for mothers of babies with Down syndrome or any special challenges. It's easy for family or medical staff, trying to be helpful, to discourage trying to breastfeed or to suggest that some babies "just can't" or it isn't worth the trouble. But these stories show that while some challenges just can't be overcome, some goals that seem impossible at first can be reached with support, belief, and perseverance. Many of the benefits babies receive from breastfeeding are particularly helpful for babies with Down syndrome, including better oral motor tone and immune protections for those with health issues.

If you or someone you know is looking for resources on breastfeeding a baby with Down syndrome, I suggest checking out Kellymom's resource page on Breastfeeding and Down syndrome.

Insomnia, radio silence, and links

I haen't been posting lately for a few reasons. First the holidays, then general busy-ness, but also some really unpleasant and challenging sleep disruptions that have been wreaking some havoc with my life and schedule. Long story short, I have no trouble falling asleep and a lot of trouble staying asleep past 5-6 hours. I had this problem once before, when 3 night shifts were immediately followed by 2 doula calls. I was able to get over it fairly quickly. This newest sleep problem seems to have been provoked by a similar period of sleep deprivation, where my body just gets so out of joint that it doesn't seem to know how to stay asleep properly. I can function fine on 5-6 hours of sleep - hell, I can function on no sleep, that's one of the reasons I'm a good doula! But I can't do it night after night after night, never having the chance to catch up, without going a little crazy. And I couldn't seem to get over it. People kept telling me "You need to stop working nights" but it didn't matter what time I went to bed - in fact, when it started I was off for about 2 weeks for the holidays, and a regular evening bedtime did nothing to help (neither did going to bed later as if I was still working). I also had a fan for white noise, ordered new blackout curtains, had a sleep mask, took melatonin, drank warm milk, you name it. At that point I was so miserable that although I am not a fan of them, I took sleeping pills for several nights to try to get myself back into a normal sleep pattern, which helped somewhat. I also added more exercise to each day and started listening to relaxation/self-hypnosis for sleep CDs. None of those alone seems to have been the complete cure, but things do seem to be improving. (They seemed better a week ago than they do now which is discouraging.)

All of that has left me with lots of posts in process and very little energy and creativity to write them. I've been more in the zoned-out blog-reading-and-occasional-commenting zone. There are posts coming...I promise. In the meantime, if anyone has tips for waking-up-way-too-early insomnia (vs. not-being-able-to-fall-asleep insomnia which most people's suggestions seem to be based around) I would love it! Like I said, things are getting better but I would really like to kick this thing to the curb. (My former MCH classmates have suggested a weekend bender...it IS Friday.)

So while you're waiting (with bated breath, I'm sure!) on my posts, check out some good stuff elsewhere.

Molly at First the Egg reposted a really kickass take on some of the discourses around "natural" birth:

Many such comments also seem to imagine that, while women who prefer unmedicated vaginal births are merely “out for the experience,” women choosing epidural pain relief in hopes of a more pleasant birth are somehow exempt from this criticism (that it is selfish and “fucking self-indulgent” to want an enjoyable birth experience). But, in general, these choices spring from a single impulse: to make the birth experience as pleasant as possible, according to an individual woman’s definition of “pleasant,” whether that primarily means “pain-free,” “empowering,” “intense,” “calm,” or whatever (all ranking AFTER, of course, “safe for mother and baby”). And it is wise and good to seek the birth that will be safest given your own medical situation and most satisfying given your own personality and history.

Dou-la-la on When DNA isn't just DNA:

There's an incredible pressure that many adoptees feel to only express gratitude for their situation, with the implied belief that their birth parent was an undesirable person from whom you have been rescued (open adoption is changing that somewhat, in many cases). Expressing any feelings of grief or loss marks you as an ingrate, an "angry adoptee", as Fugitivus mentions, and is seen as questioning the benevolence of one's birth parents. Sometimes even curiosity is unacceptable. Identity is the very definition of multi-faceted: biology is certainly not the only thing, but it is a very real piece of it, and absence of its knowledge can be felt as a loss. Yet wondering about the biological piece of your identity is often viewed as a slap in the face to the adoptive parents. How dare you want to know about these other people? After all we've done for you. Nurture is the only thing that matters, nature plays no part. We're your REAL family now.

Banned from Baby Showers shares tips on exclusive pumping:

Doctors and nurses might tell you that you can try, but they will most likely tell you that you WON’T be successful at it, especially not long term. They will tell you that your body will not respond to a pump, that a baby is much more efficient than a pump, and, well, why bother when you can go straight to formula? Trust me, ladies, you don’t have to. You CAN exclusively pump. Long term, if you want to! I’ve been doing it for 2 years for my son . . . yes TWO!

Note: Not all mothers can be successful with exclusive pumping, but these are great tips for giving yourself the best chance for establishing and maintaining a full supply.

Defensive medicine and the c-section assembly line

Apologies for the long posting silence. I have so many drafts in progress. In the meantime, I want to direct people to the excellent and thought-provoking posts and comments at the Unnecesarean's series Defending Ourselves Against Defensive Medicine.

I thought I would tell a little story to go with it. My last CenteringPregnancy group had their reunion today. The midwife organizes it so that the reunion takes place at the meeting of a group who is about to have their babies. Then the new moms can share their experiences of birth, breastfeeding, and baby care with the moms-to-be.

One of the reunion moms had quite the story. She had 3 days of labor and was finally at the hospital making very slow progress with a posterior baby. The midwife who facilitated the group was working with her and the doctor came in to tell the midwife that the woman should have a c-section.

The midwife took him out into the hallway to discuss it. Turns out he had a morbidly obese patient who was also going to need a c-section, and would need the OR and a number of staff for a significant amount of time. The doctor's take was, "Let's get this one out of the way, then we'll do the more complicated surgery." The midwife went to bat and said "No. Mom is fine and baby is fine. I know my patient is stalled, but you do this longer surgery and THEN, if she's still not progressed, you can take her to the OR." They argued and (thankfully!) the midwife won. She went back in and put mom in a knee chest position (keep in mind this was a mom who had an epidural! these positions are possible under many circumstances!) The baby rotated to OA, and after that labor progressed and baby was born easily.

Thank goodness for guardian midwives in the face of not just defensive but assembly-line medicine.

Is breastmilk "just food"?

An LC friend of mine sent me this story from the journal Nature, "Mother's milk: a rich opportunity". The article summarizes a lot of recent research on the ingredients and biological specificity of breastmilk. A few of the things mentioned:

- The discovery of human milk oligosaccharides, which are carbs that nourish not the baby but friendly bacteria in the baby's gut
- Differences in milk consumed by male and female infants (I had never heard of this before!)
- New research on how breastmilk influences infant gene expression

I liked the way the author framed these discoveries at the end:

The diverse ingredients of an infant's first meal have an impact on its development, and no matter how much we tinker with the composition of formula milk it will always lack many of the trace constituents of human milk. As research identifies these substances, it increasingly seems they serve a role beyond direct nutritional benefit: that of communicating information to the infant about the environment and even the social structure around the mother...

It is easy to see breastmilk as "just food" and anything we use to replace it as just a different kind of food. I attended an excellent lecture a while back where the speaker spent 15-20 minutes discussing breastfeeding's immunological properties, effects on gene expression, effects on maternal health and child spacing, etc. and at the end said "Oh yeah - and it provides calories". When we think about it this way, breastmilk is not "just food" - it is a way of preparing and adapting the baby to its environment (and in the case of its effects on maternal hormones, health, and fertility, the biological changes of breastfeeding are adapting the mother to the baby).

I would take a little farther and say that when we think about the act of breastfeeding more broadly in a social context, we also communicate to babies (and children, and adults!) important things about their environment. This happens both on the individual level - the time a breastfeeding mother spends skin-to-skin, holding her baby, talking and interacting with her baby - as well as on a larger scale. When what society has deemed the "optimal" method of infant feeding is supposed to take place in a public restroom lest it offend, we communicate important things about the value of parenting and of young children. When mothers are extensively supported and nurtured in how they've chosen to feed their babies, we again communicate important things about how we value those mothers' mental and physical health. As breastmilk is not "just food", the act of breastfeeding is not just transferring food into a baby, but a way to see how we see mothers, mothering, and infant care.

Attachment parenting the baby Jesus

When I visited my grandmother over Christmas she had a sweet story to tell me. Every year since I can remember she has set out a small nativity. It's pretty standard: wise men, shepherds, goats, Mary and Joseph all gathered around the baby Jesus in his manger, their arms spread wide - in worship or awe, I suppose. Every year since I can remember, the manger is empty until Christmas Eve, when my grandmother places the baby into his little cradle. This year, though, my youngest cousin (age 2) came to visit a couple weeks before Christmas. My grandmother wanted to show her the baby, so she put him in early. This cousin was breastfed until she was about 18 months and still often co-sleeps with her mom - not for any kind of deep attachment parenting philosophy as far as I know, but just because that's what works for them.

The day after my cousin's family left, my grandmother realized the manger was empty. She wondered if she had managed to keep track of the little baby figurine all these years only to lose it. Maybe the little girl had done something with him or hidden him somewhere? My grandmother looked all around the house, but when she finally found the baby, he had never left the nativity: my little cousin had taken him out of the manger and placed him back in Mary's arms. It was a bit of an awkward fit - she kind of had to hook him over one of the arms, legs dangling, in a feat of fine motor skills I was surprised she was capable of. All the more impressive that she was so determined that Mary hold him!

My grandmother hadn't touched it since - I so wish I had gotten a picture. It was a sweet reminder of how children can model what they're used to seeing - in this case, a mom hugging her baby.