Hand to Hold's Official Blog: Written by Parents for Parents

When Breast is Not Best

Trying out the Haberman bottle and a different feeding position.

Trying out the Haberman bottle and a different feeding position.

“Do you want to try putting him to breast?” the NICU nurse asked tentatively and, just as tentatively, I answered “okay.”

It was a few weeks after my baby Ben was born and while I already held him skin-to-skin most days, we had not tried breastfeeding. Considering I could not even hold him until he was a week old and in stable enough condition, I had not allowed myself to think about breastfeeding. In fact, I was dreading it.

Ever since my mid-pregnancy ultrasound when I had first learned about Ben’s cleft lip and palate, I had to deal with the possibility that Ben would not be able to breastfeed. While babies with just a cleft lip can usually breastfeed, babies with a cleft palate usually cannot. Most doctors describe the sucking ability of babies with a cleft palate as trying to suck a straw with a hole in it. It just doesn’t work.

Nonetheless, the lactation consultant eagerly shared with me some positioning techniques that she thought might help a baby with a cleft breastfeed successfully. Unfortunately, the techniques did not work and that first breastfeeding session was not a success. Ben could not suck well at all and the subsequent sessions pretty much went the same way. I tried, Ben tried, the lactation consultants tried, but in the end, we all knew it wasn’t going to work. At least I could still express my breast milk with a pump. That did work for a little while. Then, it didn’t.

After about six weeks, my milk started drying up. I would produce less and less with every pumping session. “You have to do it every three hours, around the clock, ”drink more water,” “try fenugreek” were all things well intentioned people advised me to do. But, easier said than done. Between trying to pump on a schedule, learning how to feed Ben with special bottles, and dealing with the stress of NICU life in general, I quit pumping rather than try to increase my milk production. I did my best and that was all I could do.

All of the NICU staff who were involved in Ben’s care applauded my two months of pumping. Just as I outwardly applauded, and secretly envied, the moms who brought in countless, brimming bottles of breast milk, exclaiming they were going to need another freezer at home just to be able to store all that milk. Here I was doing my best to squeeze out 10-15 milliliters every few hours, while also trying to feed Ben every 3 hours, and hearing all these moms who were overloaded with breast milk was a little hard to take sometimes. Oh, how I envied them! It was sort of like high school all over again and they were the cool girls that I wanted to be like, but never felt I quite measured up. It was such a huge relief when I decided to quit tormenting myself and accept that I was not going to be like the “cool” girls who could provide their babies with lots of breast milk. I was going to be Ben’s mom and provide him with lots of formula and lots of love and enjoy this brief period of time when I am just the coolest person in the world to him.

A birth defect like Ben’s is only one of the many reasons why a baby cannot breastfeed. Furthermore, there are many reasons why a mom cannot breastfeed. Whatever the reason why, if you are unable to breastfeed your baby, please do not beat yourself up about it. Nor should you feel guilty if you choose not to. While I commend every mom who breastfeeds or exclusively pumps, I feel those of us who do not have been judged pretty harshly by our peers . So much so, that we rarely can have an actual discussion about this topic. It almost always turns into a heated debate. Just the other day, a mom of a baby with a cleft asked for advice from the members of an online support group on the best ways to fortify her breast milk. All it took was one member to share her opinion that using formula should be the last resort, and, well, you can imagine the response. I really wish all these “parent wars” would stop. As mothers, we must get better at supporting one another, lifting each other up, instead of bringing each other down. Our job is hard enough, but especially hard when you are the mother of a preemie or a baby with special needs. All that should be expected of us is to give our babies all of our love and attention, along with meeting his or her nutritional needs by whatever means we deem fit. That is the best we can do.

Beth Puskas About Beth Puskas

Beth Puskas (NY) is a children's librarian and has one child, Benjamin, born by emergency c-section at 29-weeks after Beth developed severe preeclampsia in 2013. Ben also was born with a cleft lip and palate. He came home after a 68-day stay in the NICU and spent the next year having his cleft lip and palate repaired. Despite a global developmental delay, Ben is a thriving, happy, toddler who loves to laugh. Beth hopes to use her experience to help other families.

Comments

  1. Breastfeeding is still such a difficult topic for me. Thanks for sharing!

    • Beth PuskasBeth Puskas says:

      Hi Summer! Glad I’m not the only one! or maybe I shouldn’t say “glad” since it affects us so deeply. I guess I am glad we don’t have to suffer alone and have this opportunity to share our feelings about it. And I didn’t get a chance to reply to your “cake” post, but, yes, our babies are close in age! I can’t believe they just turned 1. Where did the year go?!?

  2. Thank you for sharing. My daughter didn’t have a cleft, but I had supply issues that resulted in me completely drying up around 7 weeks. I felt so lonely and isolated from other moms between being a preemie mom and not being able to produce, it sometimes still gets to me almost 2 years later. It’s very comforting to hear from other mothers who couldn’t do it either.

    • Beth PuskasBeth Puskas says:

      Hi Heather,
      Even though its such a difficult topic for us, I hope we continue to talk about it since 1) its therapeutic and 2) to put to rest the assumptions some people make when you formula feed your baby. I just wish I knew about this blog last year when my baby was in the NICU!

  3. Thank you so much for this perspective. I didn’t have a baby with special needs but I just never produced enough milk. I tried the pump, breast feed, bottle feed routine around the clock and it didn’t get better. I was a guilty wreck. Then I realized my baby needed ME to be calm and present more than she needed the breast. Best decision ever to stop beating myself up about it and move forward with formula.

  4. I just want to say thank you for this. I know it’s a year old almost but a year ago i needed this and obviously still do. My baby was born at 33 weeks due to my heart failing, PPCM, and I was put in four heart medications to avoid death or a transplant. Luckily the meds work and we are both great now. However I feel like I was judged harshly for using formula by people who did not know my backstory and still do even to this day. I was asked the other day if I was leaving a meeting early to go feed my baby and I said no. She said well isn’t he 11 months. I just said yes and walked away. These mommy wars need to stop!

    • Hi Courtney! I am glad you found my post helpful, though I am so sorry you have to deal with comments like that. And I am finding the mommy wars are never ending! Now I deal with comments when I let my son eat hot dogs. Oh, well. At least we have this blog to help and support each other. And I am happy to hear you and your baby are doing so well!

Trackbacks

  1. […] ultrasound. I also began to worry how my baby was going to look and, more importantly, how he was going to feed. When I was 25 weeks pregnant, a 3D ultrasound confirmed he had a unilateral cleft lip and […]

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