Saturday, September 26, 2009

Breastfeeding and Polycystic Ovarian Syndrome: My Story


This is "Part One" of my breastfeeding experience with PCOs (Polycystic Ovarian Disease). I am writing this because there is so very little knowledge available about breastfeeding with PCOs. I am hoping that by writing this, fewer mothers will go through the shock I did the day my beautiful child was born.

Tremendous commitment and enormous effort. These are the words I read in the Lasinoh pamphlet that I got with the breast pump supplies when Mimi was five weeks old. These are the words I repeated to myself as a mantra for the entire length of our breastfeeding journey. Tremendous commitment and enormous effort. I would even repeat these words to my husband so that I could make sure he knew the extent of my love for our daughter and how much I was willing to do. Tremendous commitment and enormous effort. No truer words have ever been spoken of me. And I am not sure that these words will ever be used to describe me again.

I am not normally a tenacious person. I don't typically have a lot of drive or ambition about any one thing in my life. I lived for 30 years with a lot of unfulfilled goals and projects. Aimlessly wandering and waiting for a passion to strike my life much like lightening strikes a tree. Except for my commitment to my marriage - it never happened until the day Mimi was born. In the weeks and months to follow after her birth, I discovered a tenacity about something other than my love for her... feeding her. Feeding her through me.

The first day, Mimi latched on right away. For the first 12 hours, she was an energetic champ. I dutifully latched her on every three hours. I found out later, I should have latched her on more often than that. Three hours is simply the maximum amount of time you want to wait. Not the desired norm. She may have had a strong start, but after 12 hours she became frantic during feedings. In the meantime, her body weight was plummeting. Nurses shared mixed opinions on the matter. Many said that this was all normal. Others were concerned. Because of this, it was hard for my husband and I to decide what to do.

Then the pediatrician came in on day two. The Evil Dr. Jones we later called her. This was the day we thought we would go home. By this time, Mimi's weight had dropped down to nine percent loss. Dr. Jones immediately started talking about formula. Upon hearing the word formula, I didn't like her anymore. Especially as she started the conversation with "I am the biggest proponent of breastfeeding that I know," and then started her campaign for formula. We asked her why Mimi lost so much weight? Why my milk hadn't come in? Were there any other options? Her answers remained consistent: formula, supplementation and more formula. She then crushed us even further by saying Mimi could not go home until we supplemented with formula. After 15 minutes of her formula tirade, she left us to fend for ourselves. After telling us that our child was starving and could soon fail to thrive, she left us in our hour of most desperate need.

On day three, we still hadn't given in to using formula. I was breastfeeding her every hour with the hope that my milk would come in and save the day. But it didn't and Mimi was down to 11% weight loss and becoming frantic at feedings only to exhaust herself into sleepiness and lethargy. We called the lactation consultant in for the fourth time. Up until that moment, the nurses and lactation consultant had encouraged me to wait. This happened frequently they said. As soon as my milk came in, Mimi's weight would come back up and we could all go home. But it didn't.

This warranted another visit from the evil Dr. Jones. Again, she begin her stance with, "I support exclusive breastfeeding 100%," before resuming her formula chant. After about 15 minutes of spewing about supplementing with formula, she flat out told us that we could not go home until we yielded to her because she was not willing to jeopardize her license. It did not matter that we had two lactation consultants working daily with us and that we were willing to bring Mimi to see her every day. I wanted to be home. The hospital was a stressful place for us and I believed that if I could be home, my milk would come in. As soon as that phrase was uttered, I realized she did not care for us or our daughter. And the fact that she saw us as parents that would go home and starve their daughter showed me that she had no clue who she was working with. There have never been two parents more resourceful and more determined than my husband and I.

In hindsight, I realize that what we needed was a pediatrician who have been willing to take the time to figure out why I wasn't producing milk. Had she simply taken the time to ask me about my medical history and do a bit of research, she would have discovered something very important: that PCOs can cause delayed and low milk supply. She also should have caught another important matter: Mimi was both upper lip-tied and tongue-tied. In fact she was posterior tongue-tied which often goes undiagnosed). This last matter wasn't caught until Mimi was 8 weeks old and a La Leche League leader discovered it. Dr. Jones failed us on so many levels.

Now please keep in mind that I have nothing against formula. I know babies are raised to be healthy and happy on formula (mine included). But our frustration stemmed from the fact that I really wanted to breastfeed. The other frustration was the pediatrician's lack of knowledge. There are two things I learned from this experience that are major flaws: One) most pediatricians know nothing about breastfeeding. In pediatrician school, they must only take a one day class on breastfeeding and a semester on selling formula-feeding. Two) the only knowledgeable person that might be able to help you is a lactation consultant. Not surprisingly, most insurance companies do not provide coverage for this service. And therein lay our frustration. We were trapped between a rock and a hard place. And our child's life lay in our hands.

I also would have appreciated other options. I was frustrated that our only choice was formula. And the hospital's formula at that. I found out later that I could have used donated breast milk. I also could have used different formula such as an organic version. I could have also tried to pump (thus stimulating my milk to come in sooner) and given her milk via a bottle. I'll never forget the moment I looked at one of the nurses at 3 AM and asked her if there was a nursing mother in the building. I was serious. She bit her lip and hesitated. She looked at the ceiling before saying, "yes, that would a much better option wouldn't it?" and then quickly left the room. I found out later that she was a lactating mother herself when a nurse told me she was on her lunch break pumping for her own baby. How hard it must have been for her to see Mimi losing weight and showing signs of dehydration when she had the means to nourish her herself. But our culture generally frowns on that and she would have been out of job. Formula was my only option.

So, on day three of Mimi's life. She got formula. Via the SNS system. She was satiated and at the same time lost interest in breastfeeding. Both my husband and I were crushed. Having accomplished what she had originally set out to do, Dr. Jones let us go home. Her mission had been accomplished. We had pretty much decided we were going to leave AMA (against medical advice) if she didn't release Mimi that day. We had a new pediatrician already lined up. We were told by both our lactation consultant and after-care doula that would probably be in our best interest. Even the nurses helped us pack our bags and filled out our discharge papers. Everyone except for the pediatrician was openly on board with us. We needed to be home. We needed the freedom to work with people who wanted to help us and had a better understanding of our breastfeeding challenges.

Once home, things were immediately better. We were able to shower, rest and start our research about PCOs and low milk supply. In the hospital, we had been trapped, unable to use any outside resource whatsoever. Mimi laid in a glass cage, my husband on a pile of hospital sheets in the corner directly under the air conditioner and my own back was sorely aching from lying all day in a narrow cramped bed. We were all in the same room, but not together. My milk didn't come in like I had hoped, but all three of us immediately felt better. I'll never forget the moment I laid on our big soft bed and my husband brought Mimi to me. In the hospital, Mimi had been fussy and cried most of the time. Here at home, she snuggled happily into my chest, my husband's arms wrapped around the both of us... and we fell asleep. Together. He took the photo above on Mimi's second day home.

Even though we continued working with the lactation consultant from the hospital, she was not as helpful as we hoped. She pointed out that Mimi had a bad latch and that my supply was low - but that was about the extent of what she did. Why there was a bad latch or low supply she couldn't say. She did not catch Mimi's posterior tongue-tie or her upper lip tie (this was later caught by a La Leche League leader). She also had no knowledge of breastfeeding with PCOs. She was sympathetic and friendly. But she also told me that I only had two weeks to bring my milk supply in, after that it would be too late. I later proved her wrong.

It was with the help of a doula who ended up being our guardian angel and friend that I learned more about PCOs and how it can cause low milk supply for 30% of PCOs sufferers. She did something that neither the pediatrician nor the lactation consultant did: she got her ass online and searched high and low. And she ordered me a book "Making More Milk" as it had the latest research available. She used her own personal knowledge about breastfeeding to encourage us and cheered me on daily. As Bo and I struggled amidst our new roles as exhausted parents, she was a beacon of shining light and love for us. I would not have the beautiful heavenly breastfeeding relationship that I have today with Mimi if it wasn't for her.

And thus began our journey... click here to go to Part Two.

23 comments:

  1. Wow. I am so impressed with you and your willingness to keep at it. It so sad to me (and incredibly infuriating) that so many medical professionals do not learn what it takes to SUPPORT families. It is simply amazing that those parents who strive to avoid interventions are considered wrong and are viewed as putting their children at risk, when they are trying to do what is best for their child. The educated, responsible, and holistic parent is 'an issue' when they should be viewed as a hero and advocate for their child!

    I can't wait to read the rest and am so glad that you were so strong. Throughout my pregnancy, labor and breastfeeding I would always pray for strength and grace. I think it takes a lot of both to make it through!

    I'm so glad you found someone to stand by you and advocate for what YOU wanted.

    BTW--we ended up using donor milk for a few month after an accident left me dried up. At first I didn't know how people would react. Then I realized I didn't know any of the cows who made the formula we were using. :) No one I told freaked out, but who knows what was said later! Another woman we knew had a mom actually feed her little guy when she was having issues keeping him awake. Once he realized how great feeding would be he got serious for her too and she is still feeding at 1 year!

    Best of luck and waiting for the rest,
    Heather

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  2. Ugh. What a nightmare! I would have been picking up my baby and going home...

    Isn't it sad that doctors are more worried about their jobs then the people they care for? That they're so quick to take the easy way out? Grr. It's infuriating. There are so many alternative solutions to problems and doctors are never even willing to look into them.

    Good for you for sticking with it! And I'm glad your persistence paid off. I'm looking forward to the rest of the story.

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  3. Oh, I just feel overwhelmed with emotion for you and your wee babe after reading this! You are the best momma for your baby and that is all that matters :)
    I wish wet nurses were still the norm. I would not have hesitated to nurse or pump for you. In other countries that is the norm...
    And Yay for diligent caring Doulas!!
    Can't wait to read the rest of your journey.

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  4. So sad to hear this, but it happens. I was told that I was starving my 5th child, and I got pissed and left - milk generally doesn't come in for a few days and they were saying my colostrum was nothing. Aiden was tongue tied, we didn't know about it until, like, way down the road, funny huh, but luckily he nursed good. Awesome for you for doing what is in your and your child's best interest.

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  5. I have PCOS and have researched somewhat about the correlation. But I also think that in general, low milk supply isn't that rare. I was lucky and actualy had an oversupply. I went to a breastfeeding support group 2x a month for about a year and everytime there was someone new with low supply. I gave birth in a freestanding midwife center in which the lactation consultant is right there. Formula is never mentioned, we went home 6 hours after birth. It is a different experience, no pediatrician on your case! In anycase there are lots of things to do besides formula and I wish that everyone knew about it. My birth center educates you on these issues. But in most cases women are not educated.
    I admire your determination, I think it is a wonderful gift and great bonding experience. I nursed my daughter until she was 20months. She never had formula. For us, I would have really been crushed if I ever had to give formula. But at the same point, have nothing against it! I donated extra milk to a Mom who actualy did let other Mom's nurse her baby. She had extremly low supply.
    I hope things are going well now.

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  6. after my first was born in the hospital I hada very similar problem as you, with the threat that he could not go home untill he had formula. My baby was very affedted by C-section and labor medication so was a lazy latch and my milk did not come in due to same medication and stress. The staff was very little help even the LC and nurses. As soon as we got home my milk cam in but it took two weeks for him to nurse on his own. He didn't have any other formula then the forced on at the hospital and next birth I stayed home because I hated the way we both were treated!
    I'm glad you stuck with it!!

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  7. The one constant at doctors offices are sales people. They sell and sell and sell. A continual drip of new 'information' to keep the doctor up to date.

    Great determination on your part. It was a sad day for me when my wife asked to stop trying. Out of love and respect and not knowing where else to turn I said yes. Like you our first pediatrician and the lactation consultant were nothing but frustration.

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  8. I learned nothing about breastfeeding from the nurses and staff in the hospital and it took me 6 weeks to get the hang of it. Numerous times I thought of giving it up, but didn't.

    Hospitals are for sick people, birth has no place in a hospital. I will do my best to deliver my twins (due in 8 weeks) at HOME.

    Mimi is lucky to have you for a mother. Praise for you and your husband's strength

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  9. Thanks you so much for sharing this personal story. I know it can sometimes be hard to talk about these things for fear of having people judge your decisions. I have PCOS myself and had multiple bf issues with my second child. PCOS is such an obscure condition and there is so little general knowledge out there about the issues PCOSers face-- it's a breath of fresh air to find someone else committed to sharing their experience and helpful information.

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  10. Hi! What an awesome story...thank you so much for sharing. I would love to add your link to my website, if that’s okay with you. I think so many moms can be helped through this.

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  11. I am extremely proud of you and your tenacity to fight to give her what you felt was best despite an incredibly stupid lack of support. Well done :cD Looking forward to the next installment. I also have PCO and it's interesting to read someone elses experience with it.

    <3

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  12. And this is why I am full of rage at doctors these days, especially in the OB/pediatrician field. What a nightmare!

    I'm so glad that you eventually found help & that you stood up for yourselves best you could. I would absolutely be writing that doctor's superiors, that sort of behavior and misinformation is NOT acceptable for someone with her job. Plus, she might learn something (how could she not know about the PCOs?)

    Looking forward to the second part so i can link your story on my blog!

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  13. Bringing tears to my eyes. You are an amazing mama. I don't know how you were up for such a challene, but Mimi is lucky to have been born to you. It is so inspiring to read. My mother in law actually nursed a friends baby, it is too bad that it isn't really part of our culture. Thanks for sharing something so personal.

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  14. I guess I am just very blessed to have had the OB and and Ped and the lactation consultant that I did. My daughter was 9lbs 12oz at birth, and when we left the hospital, she was 8.2. They never brought up formula at all, and it took my milk 6 days to come in, I think due to the c-section. That is so awesome that you really stood up for yourself, educated yourself, and didn't give up. That is what is important. No doctor will ever be perfect, and although your case was extreme, I do think it is up to us to do some things for ourselves, and never be afraid to advocate, which you did an AWESOME job of.:) By the way, I am from the cloth diaper board.:)
    Emily

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  15. You aren't the only Mama out here who's been given bad advice and little support from the hospital staff in the place she gave birth. I "failed" to nurse my first two children thanks to, time and again, receiving bad information from doctors and nurses. My third was born at home with a midwife and shockingly, she was NO BETTER at helping me. I went on to nurse that baby exclusively for 16 months. The difference? The Internet and the discovery of Kellymom.com Without that website, I would have given up yet again. I also received an ENORMOUS amount of mother to mother support from LLL and women in my online cloth diaper community. It made all the difference in the world.

    I am on the edge of my seat for part two! *HUGS* Mama.

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  16. There in lies the big lie. And it has gone on for awhile. Reality:babies loose weight after birth. Big lie is when those in positions of influence step in and say "your baby will blablabla if you don't supplement".The big lie was around in the 70's and is,sigh, still alive and well.

    The trouble is communication. In generations gone by there was the extended family. Now I am speaking of the generations prior to even my children births in the 70's.

    There was always a mother, sister, auntie or elder woman to help and support the new mother. There was also a societal structure that reinforced the mother/child bond and the need for the mother to be the sole nutritional provider for the child.

    We have lost that. We attempted to reinstate it in the 70's but try as we did it is apparent there is still work to be done.

    Breastfeeding without positive,informed support is like trying to climb a mountain without the proper equipment. You keep sliding down hill despite your determination to go forward.

    So hats off to the women such as you whom have persisted in your vision of giving your child the very,very best start in life that you can provide.

    Many times we get so caught up in comforting those who didn't make it to their goal we leave out praise for those who did.

    If we work on restructuring the system and give every woman the support in valid information she needs instead of providing them with "excuses" to abandon their desire to give their baby the best I think we will see a much different outcome for more women and babies.

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  17. I hope you have not given up on nursing yet. My own son was born 7 weeks premature and did not start nursing on is own until 14 weeks of age. Like you I was discouraged by the medical professionals and my insurance would not pay for lactation services. But I listened to the La Leche League, pumped and fed him bottles until 14 weeks, when he started nursing. FInally!
    I don't believe babies lose interest they just take the easy route when they are starving, nursing is instinctive...so keep trying with your little one. There is still hope.
    :)

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  18. I don't suffer from PCOS but I do struggle with milk supply due to a daily medication I'm on for dermatographism which gives me beyond sensitive skin. We had a real struggle with my first one breastfeeding and had to give it up at 5 weeks in part to low supply and in part to extreme pain from sensitive skin.

    This time around I'm determined to see it through and so far have done much better than the first regarding my sensitive skin, but as for milk supply I'm still at a loss about what will effectively help. I can' wait for "Part Two" top see what has truly helped you.

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  19. I can't wait for part 2. I was released from the hospital on day 3 my baby was 8.3 and born at 9 even. Once home my milk finally came in but we were back in the hospital by day 4 b/c of jaundice and they made me believe if I didn't give him formula the jaundice would not get better and he would end up with brain damage!! Still mad about that but he still nurses at one year old because I never gave up. Although he only gets a little breast milk it's better than none. I also bought "Making More Milk" and hope it helps this time cause now I have baby #2 on the way!!

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  20. All I can do is nod and smile. I don't know exactly what you went through, but I had problems with all 3 of my kids latching on. My son had a tongue-tie which nobody fully diagnosed, but they cut it anyway a week later. I forced my doctor to cut baby #2's tongue tie, although it wasn't "so bad" (their words), and my husband did baby #3. The ped. was almost furious that he did this, but we had to go to the hospital on baby's day 5 due to loss of weight too. My husband wishes he would have done it sooner, and we would have been better off. I'll definately be telling my kids to watch out for this. I'm so sorry that you had to find out the hard way. BTW, I wouldn't ever be pregnant again without a doula and a LC (ours is a LC and Nurse Practitioner!)

    Paula

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  21. I'm glad you are writing again because I've missed you. Breastfeeding can be sooooo hard! Your doula sounds like a blessing and I'm glad you had her to support you.

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  22. It is awesome that you're getting your story out there!! I went through something similar, only nothing ever did help. I continued to nurse my first while supplementing with formula until he was 27 months old and he self-weaned. i am now nursing my second, who is 8 months old, while supplementing with homemade formula. it's good to know that it IS possible for some people, though.

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  23. Waiting for Part II-- soon?

    Lisa Marasco

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