Erin wrote the following FFF Friday in honor of May being X & Y Chromosome Awareness Month. She tells me, “1 in 500 children have X & Y Chromosomal variations that present in many different ways: speech delay, low muscle tone, behavioral problems, academic achievement, dyslexia, dyspraxia and attention deficit disorders. It is thought that 20 children are born each day with X & Y variations, but only 5 will be diagnosed in their lifetimes. Detection of chromosomal abnormalities can help children receive treatment and intervention to help them become healthy, confident and able to succeed.”
I am honored that Erin chose to share her story and advocacy for this condition with the FFF community, and hope you find her story as informative and inspiring as I did.
For more information on X & Y Chromosomal variations, Erin recommends visiting The Focus Foundation Website.
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| Source: Genetic.org |
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When my husband and I decided to enter into the world of parenthood, we had some pretty lofty expectations of perfection. I’d get pregnant easily, I’d have a natural birth, I’d breastfeed, and cloth diaper. We would be a, blissful, radiant, perfect family.
I did not get pregnant particularly easily. When I did, we were thrilled, At sixteen weeks, I had the fairly standard AFP (Alpha Fetoprotein) test done. The test came back with an elevated risk for Downs Syndrome. I scheduled a Level II sonogram, which revealed nothing that would suggest a chromosomal abnormality about our baby. A month later, at a follow-up scan, a marker for Downs Syndrome was found, and we scheduled an amniocentesis for additional information. We learned that our daughter has Trisomy X (also known as XXX or 47,XXX), an extra sex chromosome. It is among the most common of chromosomal variations, and it is thought that only 30% of women with the variation will actually ever be diagnosed as having it. It can cause potential speech and language difficulties, and muscle coordination and tone issues.
After twenty-six hours of labor (preceded by 3 days of prodromal labor), I gave birth to my daughter at the hospital, and she was immediately evaluated by the NICU team and declared “perfect.” I did miss the fresh from the womb moment, but being sure everything was fine clearly overrode that.
I was encouraged to try and breastfeed, but my first memories of these moments are hazy (and thankfully captured on film.) I know that I felt like not much was going on, and the baby and I were exhausted. We were moved up to the mother/baby ward and I kept attempting breastfeeding, but my daughter didn’t seem particularly interested, and I was very interested in sleeping.
About seven hours after her birth, a nurse came in and declared that she was jaundiced. I was encouraged to keep feeding her, but she was under the bili-blanket a few hours later, where she remained for the next three days. Before I was discharged, I saw four different lactation consultants. The first smashed and grabbed and I felt angry and unhelped. The second told me that my daughter had a weak latch and was thrusting with her tongue, and then clamping down with her gums to keep my nipple in her mouth. Ow. The third was another masher/grabber, and the forth actually helped us. The three times she saw me were the only three times I ever felt like I successfully breastfed my daughter.
My daughter’s jaundice kept getting worse, and we were told we needed to supplement. My husband finger fed our daughter formula from a tube taped to his finger while I pumped and cried. Hardly the perfect breastfeeding experience I’d imagined.
I was discharged, and my daughter was admitted to the pediatric unit because her jaundice continued to get worse. In Peds, she was in an isolette except when I took her out to feed her, which could sometimes take an hour and a half before she seemed satisfied. The lactation consultant asked me if I had been on any medication prior to giving birth, and I told her that I had been medicated for PCOS. She suggested I should start taking that medicine again, as it could help with milk supply. I continued to pump and finger feed what I could get, supplement with formula, and kept trying to get my daughter to the breast.
After three more days in pediatrics, my daughter was finally discharged and we got to come home. And that’s when the “cluster feedings” started. Only they weren’t cluster feedings. They were five hour nursing sessions that only ended when I had to go to the bathroom, and then they’d start again. My daughter would fall asleep at the breast, but I plodded on, determined to make breastfeeding work. My local LLL leader came over (an hour drive for her!) and tried to help too. I visited another lactation consultant. In the hour that I nursed, my baby transferred a quarter of an ounce. In my stubborness to breastfeed, I was missing that I wasn’t actually feeding my daughter.
I switched to pumping, but yielded meager results, even with the hospital grade pump, and after a few days of sobbing at 3 in the morning while hooked up to the pump to get an ounce and a half every two hours, my husband convinced me that what my daughter needed most was a mother that was healthy enough to take care of her, which I was not capable of doing. My every two hour schedule had me falling apart at the seams. I couldn’t not pump, or my supply would dwindle almost immediately, and I couldn’t hold my daughter and pump. A wonderful friend led me to this site, which I read a lot of during pumping sessions, and I slowly came to the realization that I needed to stop pumping and be a mother. I couldn’t do both.
Looking back, there were a lot of factors working against us. The lactation consultants at the hospital couldn’t “diagnose” a muscle issue (for fear of losing their jobs, as I learned later,) which clearly my daughter had. She struggled with bottles for the first few weeks, as well. There was no way that she was ever going to latch onto a breast efficiently enough to get food. Her inability to transfer likely had major influences on my initial supply, as, I’m sure, did my PCOS.
I still feel pangs of guilt, 9 months later, about not being able to breastfeed. The culture of “breast is best” is certainly pervasive enough to cause a lot of negative thinking if you’re unable to breastfeed. But what I can do, and what I do every day, is be the best mother that I can be. My daughter won’t remember what food she ate for a few months at the beginning of her life – she will remember how much her family loves her, and how much we celebrate her.
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Celebrate your own child – and your own infant feeding experience – by writing a post for FFF Friday. Email me at formulafeeders@gmail.com.
About the Author:
Suzanne Barston is a blogger and author of BOTTLED UP. Fearless Formula Feeder is a blog – and community – dedicated to infant feeding choice, and committed to providing non-judgmental support for all new parents. It exists to protect women from misleading or misrepresented “facts”; essentialist ideals about what mothers should think, feel, or do; government and health authorities who form policy statements based on ambivalent research; and the insidious beast known as Internetus Trolliamus, Mommy Blog Varietal.
Suzanne Barston – who has written 428 posts on Fearless Formula Feeder.
Thank you Erin for sharing your story.
Erin,
Your story is so touching. I'm sure your experience will help lots of women in similar circumstances. And you are so right! Your daughter won't remember what you fed her, but she'll know that she has the best mom who loves her more than anything else in the world! Thank you for sharing.
Erin, your last sentence sums up perfectly why we should all chill out about baby feeding issues. Or, as I used to put it to myself when I was struggling with the pump, “By the time my son's twenty he'll have a lot of reasons for considering me a bad mother, but my troubles pumping enough milk won't be one of them!”
Erin, thank you for your post about breastfeeding and this issue. It is really a shame that the people there assisting you with breastfeeding could not be honest with you about the facial muscle issue with you. I am so happy that you saw through all of this and made the choice you felt that was best for yourself and your daughter. As time passes and you see your daughter grow up and that guilt will slowly go away. My first DD I stopped breastfeeding at 6 weeks and I was told I was not giving her the best start in life. She is almost 4 and her preschool teacher said she is doing remarkably well academically and socially. She still tells me she loves me even after she gets into her toddler tantrums. All this coming from my “doomed” formula fed baby who I supposedly couldn't bond well with. You will start to see how you fed your children has little to with a lot of things.
I'm glad you shared your story, Erin–I learned a lot from reading it. I think you have the right attitude, and that your daughter will grow up knowing her mom and family all love her so much.
“The lactation consultants at the hospital couldn’t “diagnose” a muscle issue (for fear of losing their jobs, as I learned later,) which clearly my daughter had.”
Would you be able to expound on this a little more? Even though I'm not surprised that health care professionals would be encouraged to overlook a diagnosable health condition in the interest of slavishly promoting breastfeeding among all…still, it never fails to take my breath away when I hear about an example like this. IMO, stuff like this is precisely why all parents need to be up-in-arms about the influence of militant lactivism in health care, because no good comes from one-size-fits-all medicine.
They aren't allowed, by hospital regulations, to “diagnose” anything. Not a tongue tie, not a muscle issue, not insufficient glandular tissue. I am hazy on the actual details, but I was told it had something to do with them not being considered qualified to make diagnoses, which is totally ridiculous. I also gave birth at a hospital that depends on a certain percentage of mothers to be discharged with the breastfeeding label to maintain certain outside funding.
If LCs could do their job honestly, without the issues that my LCs did, I think fewer women would have such a horrible time. I wish I had been told from the start, and could have enjoyed those first 3 weeks, instead of being a disaster.
Agreed. Thanks for sharing your story. I'm sure your daughter will remember how loved and well-cared for she was. And I bet she won't give a flying flip whether she was BFed or FFed. I don't, anyway.
I was wondering about the LCs' not saying anything about your daughter's muscle issue, too. Please tell me you meant they weren't qualified to diagnose her condition– not what Teri said. And even then, couldn't they refer her to someone who could diagnose her?
Gah! I had a super long response typed up and my iPod ate it.
Apparently, and this was according to an LC that I saw outside of the hospital, “diagnosing” issues is allowed only by physicians. Diagnosing things is apparently outside of the scope of the job of an LC. Which, as we know, is total BS, because how many physicians take 45 minutes to sit with you and help you breastfeed? I never met one, that's for sure.
My daughter had been identified as a child that might have trouble breastfeeding even before birth due to muscle issues. I read later (while my midwives stepped out of the exam room at some point) that it was even written in my chart that although I wanted to exclusively breastfeed, I “might find it difficult given muscle tone and coordination issues.” It irritates me to know that I went so long without someone acknowledging those difficulties in a compassionate way.
I also learned that my hospital was one that requires a certain number of women to be discharged with the label of “breastfeeding” or they lose grants. I know that particular issue has been discussed on this site before.
I am proud that I was able to educate my midwives, who seemed disappointed in my stopping breastfeeding. I told them “No, it's not what I wanted at first, but it's what's working for our family.” Sometimes, it's just what works.
Thanks for relying. It's really maddening no one felt like they could tell you about your daughter's condition and the effect it might have on breastfeeding.
So, some hospitals are actually required to have certain breastfeeding rates. I had my suspicions, but I think this is the first time somebody verified them for me. I was taught in school (as an accounting major) that quotas can motivate to perform their jobs better. I was also warned that people may resort to actions you never intended to meet quotas, particularly when they are unreasonable. For instance, the manager of a fast food restaurant might start cooking food only when it is ordered to cut down on wasted ingredients. A factory line worker might break the machinery so they have an excuse not for not meeting production quotas. Hospital staff might pressure moms to breastfeed when they don't want to. Or maybe nurses and midwives won't be forthcoming about the difficulties moms and babies are having/ may have with breastfeeding. So I personally don't think quotas belong on breastfeeding rates. It's just too personal of a decision, IMHO. And what are the hospital staff supposed to do when not enough patients are interested, have work situations conducive to nursing, are physically able, etc.?
Erm… I mean thanks for replying.
I'm so sorry for what you went through-that is really unbelievable and unfortunate. Like Bethrnich, I too had my suspicions that there were hospitals out there that receive financial incentives if they meet certain breastfeeding targets. Do you by any chance know where to find this information on specific hospitals? I'd really like to know if the hospitals in my area fall under this category so that I can choose wisely and/or be prepared. Thanks!
I have an accounting background as well and currently work in an internal audit department at a large global company. You are absolutely right about quotas and unintended consequences. They create incentives to circumvent established controls and procedures, oftentimes in less than honest ways. In fact many of my department's audits work to identify instances of just that in a variety of capacities related to my employer's business. Why should the standard of care that a hospital provides to a new mother (one of the most vulnerable times of a woman's life) be tainted by incentives to essentially commit fraud (in this case forcing breastfeeding on someone unable or unwilling and/or concealing a legitimate problem that could interfere with breastfeeding). This is reprehensible and the equivalent in the business world would be frowned upon and the offenders disciplined. I also think you make an excellent point that breastfeeding is too personal a decision to be tied to a quota/financial incentive. If only our government did not blindly believe that breastfeeding in and of itself is the answer to every health woe in our society (because it's NOT)…
I should have replied sooner, but honestly I was so infuriated by this that I really didn't have the words.
This kind of thing is what really scares me about the lactivist movement. Promoting breastfeeding as a good option is one thing, but the way breastfeeding advocacy is right now, we're looking at just this kind of unethical health care. In what other areas of medicine would this be acceptable? I can't think of any.
Wow ! wonderful story I like that story and your website also.baby to siblings
Thanks
Zeba akhter