Breastfeeding 1-2-3

Challenges of Cleft Palate and Pierre Robin Sequence

by Angela White, J.D., breastfeeding counselor on November 27th, 2006

Tanya from the Motherwear blog knows that I love to share your breastfeeding stories, and she emailed me to see if I’d like to feature the story of Lauren. Lauren is an Athens, Georgia mother who gave birth to her daughter Charlotte last March. Charlotte had a cleft palate as part of Pierre Robin Sequence, which is also generally characterized by a small lower jaw and a tendency for the tongue to fold up in the back of the mouth. Lauren faced unique challenges in breastfeeding Charlotte, and she quickly became frustrated by the lack of information and support for mothers like her. That’s how her blog Patience, Grasshopper came into being. As she says:

I fell into a huge gaping hole and now that I am aware of its presence, there is no way that I can just walk away without filling that hole properly. I feel I can do that through sharing my story and through becoming a [lactation consultant] specializing in the care and guidance of moms with cleft babies.

Charlotte spent the first month of her life in the NICU while Lauren exclusively pumped breastmilk for her. Lauren continued to exclusively pump for five months until Charlotte was ready for cleft repair surgery. Here’s a quote from Lauren’s blog, nine days after Charlotte’s surgery on August 21st:

Yes indeedly doodly! We have nursing! I am THRILLED to report that Charlotte nursed this morning for about 4-5 minutes. And I don’t mean she half-heartedly sucked here and there. Nope. She GULPED. She chowed down, she had her eyes closed and was just sucking it right back. I CRIED!!!!!!!!!!!! Probably what caused her to break her suction. LOL.

I ended up going to bed last night around 10:30 and DH (dear husband) tried to wake me up three times to pump but apparently that was wildly unsuccessful. So this morning I was VERY full and decided to go try and nurse prior to pumping. She was pretty fussy, pain I think. But she latched on and when the letdown finally happened, she clamped on and went to town! I can’t even BEGIN to describe the amazing feeling that swelled up inside. To see AND feel her nurse was just - well - beyond any words in the English or any other language. Beautiful is the closest thing I can think of but it was WAY beyond that as well.

Lauren continued to pump exclusively for another two months as she worked to get Charlotte to nurse. She experienced good days and bad, and she shares the lessons that she learned over that journey:

Would I do anything differently? Sure. I would have supplemented AT the breast from the beginning. [Supplemental Nursing System], something - anything. Just to have her used to the breast instead of the bottle! But I still would have pumped just as faithfully. THAT I would not have changed.

Lauren reports that she has decided to try to get Charlotte interested in the breast again. On November 14th she wrote:

As for Charlotte and I - we are doing a LOT of skin to skin, and she’s been familiarizing herself with my breasts. My two year old seems to think that the left one is Charlotte’s and the right one is hers although she’s not nursing anymore. I plan on co-bathing with her this week as well and seeing if that goes anywhere. I have not started to pump again and don’t plan to so if this is not successful, then it will be the end of it.

Lauren’s journey continues, and I wish her the best of luck in all her endeavors. I think it’s wonderful that she plans to become a lactation consultant so that her experience can benefit other mothers and babies.

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POSTED IN: breastfeeding basics, breastfeeding stories, health of the baby, pumping