Wednesday, October 13, 2010

31 for 21: #13 She Won't Be Able To

Besides the fact that my doctor who delivered her was such a downer about Elise's birth, he was also the first to tell me she "wouldn't be able to" breast-feed. And he was followed by, what felt like, the entire dadgum hospital. Every single nurse (except Gayle) and the lactation consultant(!) and the pediatrician and the doctor who checked us out so we could leave...EVERY SINGLE ONE told me that babies with Down Syndrome have lots of problems breast-feeding and that she wouldn't be able to, and would I like a bottle of formula?

Me being me, was irked by someone telling me she couldn't without giving it a try...and with each progressive negative, I wanted even more to be able to nurse my baby. When the lactation consultant came in and told me that she really probably wouldn't be able to, I was totally fed up with it, and told her that of all people she should really TRY to be more supportive. She patted my arm like I was crazy and handed me a pamphlet and wished me "the best".

The theory is that babies with Downs tend to have a low roof of their mouth and an over large tongue, which they tend to push out. The low muscle tone that they struggle with also affects the coordination and power to suck. Add in a general sleepiness, in Elise's case, and on paper it looks like a death knell, apparently.

Well, the pediatrician was surprised that Elise was still nursing at the first week check up, and I told him that other than having to be jiggled awake to remember to eat, she was doing really well. She really didn't like having her feet messed with, so I tapped the bottoms of her feet the entire time I nursed her...she wasn't gaining weight in a hurry, so they congratulated me in feeding her and suggested supplementation and sent me home with yet another formula sample.

She continued to not gain weight even though she nursed constantly. (The formula stayed in the cabinet.) Within 2 months, she was diagnosed to be in Cardiac Failure. She had holes in her heart (ASD and VSD) and we discovered with the open heart surgery that her mitral valve was also malformed. During the month between the cardiac failure diagnosis and the surgery, she needed more calories to live. Her heart was working SO hard to pump that ALL her caloric intake was going just for her heart to function, there was none left over for growing. So her doctor told me to supplement and get her to eat even more. We ended up mixing preemie formula and CORN OIL (per a nutritionist!) into pumped breast milk and literally pouring it down her throat with a syringe. During this time both her pediatrician and her cardiologist told me to go ahead and give up, that she would probably end up on a feeding tube of some kind and may struggle with nursing after all this. So I might want to consider giving up and save myself all the trouble. And again, this irritated me to no I stuck it out again, figuring that she at least deserved to try after the surgery.

She was given breast milk in her feeding tube post surgery and her tummy did brilliantly...I nursed there at the hospital, tubes and all and she had no troubles getting back into the swing of things to the surprise of the nurses...and we went home with no feeding tube.

Ultimately, Elise happily nursed until she abruptly self-weaned at 16 months. Just a couple of weeks before she was diagnosed with leukemia. In retrospect, I would have liked to retry nursing her when she was refusing to eat anything, but with the lack of support, I had no idea to ask about if she could start back up...I learned recently, that we could have, but with her biting issues on steroids, it may have been God saving me from a miserable situation...

I am killing two birds with one stone this morning. I am writing this for a Le Leche League consultant who wanted to address how babies with special needs still can nurse successfully. Too often those in the support positions are not educated with the success that can be had despite how it looks on paper. I also wanted to encourage those who are reading this blog who are expecting and new parents who are searching for answers. Sometimes all that is needed is a little dose of stubbornness. If you are willing to stick it out a little bit longer than is easy, the pay-offs can be big. This is only the first of many things where you will have to plug on despite the medical community. Following your gut can be 50% (or more) of parenting...God hardwired mommies to fight for their babies and daddies to protect their wives and do it. Don't fight the urge. He did it for a reason.


  1. Great post! You just addressed a question I was worrying about. I nursed my daughter until she was 1, and my son self-weaned at 9 months. I was really wanting to nurse my baby when it arrives & had already heard negative things about nursing a DS baby. This is very encouraging! I had a hard time nursing my first baby & stuck with it so I am confidant I can do it again! Thanks again for this great post!

  2. good grief, even the lactation "consultant"? grrrr. Good for you for showing them what's what! Nursing is such a great gift to give any baby, and the more health issues they have the less they need formula, IMO. Breastmilk was made for babies! ALL babies!! ((hugs)) You did GREAT!!!

  3. Now see "typical is NOT typical". Turner was born tiny at his 40 weeks. He had trouble maintaining temp. and we noticed right away his tiny narrow mouth. I tried and tried to breast feed but didn't work. By day 3 the little peaceful baby that never cried screeched for hours - he was hungry. Quickly while in the shower (yes, he was so good I could actually shower those first weeks)I had a good cry and made the decision to give him a bottle. Instantly he turned back into the happiest, most content baby. I knew I had made the right choice for him. At the week check-up the pediatrician told me that I need to try again. Since the shower episode I had continued to try and it was not working (my parts or Turner's ?- who knows) and my breast were not a pretty sight. At this point, I was ready to flash him with my chest and tell him exactly what I thought of "trying again" but I just left the office and found me another ped.
    Soooo.... short story long, once again a labels don't fit anyone.

  4. Yup! After a reasonable time with my first two, I was disbelieving that breastfeeding could be hard...but with the nightmare-ish flip-flopping, bouts with Mastitis, and so on and so on with my third; I totally get why it would be so hard and miserable that it would drive someone to stop for the protection of your sanity and baby's peace. I've been lucky, but with experience comes understanding and bottle feeding does not lessen motherhood any less than a c-section makes you less of a mother!

  5. Mother always knows best. Glad to hear that you stuck it out.

  6. Great post! We did have difficulty latching on but we used what is called a finger feeder- I pumped and fed her through a tiny tube taped to my finger so she could build up to breast feeding- which she did. I certainly think that she is healthier for it although pumping and working full time was a friggin nightmare. We breastfed for nine months.