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A difficult decision – Kirsten’s story

Posted on March 10, 2009
Filed under: Breastfeeding against medical advice, Breastfeeding while on medication

I had a fairly normal pregnancy – or so I thought. In the last trimester, I started experiencing a lot of back pain, but since everyone seemed to have back pain during pregnancy, I just passed it off as normal. My daughter, Sophie, was born in July 08. I had always said I did not hope to breastfeed, but that I absolutely intended to. There were no ifs or buts. I read all I could get my hands on, while I was still pregnant, and educated my husband into a position of full support (his mother did not breastfeed due to being told – probably wrongly – that she didn’t have enough milk, and that was all he knew about the subject). I gritted my teeth through the first couple of weeks of breastfeeding – it hurt a lot as my nipples were grazed due to initial poor latching, and also I think my nipples just had to get used to it. But with persistence, by the time Sophie was about two weeks old we were feeding pain-free.

Well…almost. My back was still causing me a huge amount of pain. I was seeing a physiotherapist for an unrelated hip problem, and she was trying to work on my back as well, but instead of getting better it got worse, to the point where I could not pick up or carry Sophie any more. That was heartbreakingly difficult for me as a mother! (Fortunately my husband is home full-time, so he did all the lifting and carrying, including getting up with me to get her out of the cot for middle-of-the-night feeds.) My doctor, when I mentioned the pain to him, said it was normal, but I knew something was wrong. The physiotherapist suggested a CT scan be ordered. When we got the results, it showed two fractured vertebrae in my thoracic spine (between my shoulder blades), and a third vertebra that was obviously weakening but not yet actually fractured. I had injured my back about 2.5 years previously, but hadn’t experienced any pain from that since then. My doctor put me on painkillers (with instructions to stop taking them immediately if I noticed them having any effect on Sophie through my milk), and ordered another scan, this time to test my bone density. It came back showing severe osteoporosis. Funny how my doctor suddenly believed that my pain was not normal!

Mlik time So the next question was, why did a perfectly healthy 26 year old get osteoporosis? I had grown up on a goat dairy drinking fresh goats milk by the gallon. I’ve always had a good calcium intake. The next step was to try to get me in to see a specialist at the hospital. I asked my doctor if it was OK for me to still be breastfeeding, and he said it should be fine. At this stage, it was about September. I was supposed to be going back to work early October. After a lot of chasing, the hospital finally told us that my appointment was set for Christmas Eve at 8.30am. I wasn’t very impressed. All the while I was still on painkillers, and they helped a bit, but some mornings I could hardly get out of bed. One morning, it took me over 3 hours to do so…I ended up feeding Sophie in bed, playing with her in bed until she was ready for a nap, then I napped with her, and finally after that I was able, with my husband’s help (after taking painkillers and using a heatpack) to crawl out of bed. I ended up needing to use a walking frame just to get up in the mornings and get around the house. I didn’t see how I could wait until Christmas Eve to even see a specialist, let alone start some sort of treatment. And if we upped the painkillers I was taking, I would have to stop breastfeeding because it just would not be safe for Sophie.

Thankfully, a lady at church spoke to a female doctor at church, who agreed to see me and try to pull some strings within the hospital. I went and saw her, and the hospital phoned me the next morning asking me if I could come in straight away. So we jumped in the car and went. The specialist took my height, and I had lost about 3 inches since I was in high school! My back has quite a pronounced curve in it, which I hate, but I’m going to have to live with. The diagnosis was a rare condition, called pregnancy & lactation associated osteoporosis, or PLO. They don’t really know what causes it or why women get it. The drugs currently used to treat age-associated osteoporosis (which breastfeeding reduces one’s chance of getting, oddly enough) are excreted through breastmilk and would interfere with Sophie’s bone development. They are also stored in the body for a long time, and if I took them I probably wouldn’t be able to have any more children because the drugs would pass through the placenta and affect a baby’s bone development as well.

This was all well and fine, I had already researched these drugs and decided I would not take them even if they were prescribed. But the specialist didn’t even suggest them. Instead, he told me I must wean. I burst into tears right there in his office, in front of the registrar and a student doctor. He was very gentle (his daughter is an ABA counsellor, so he has some idea about the importance of breastfeeding), but insistent. I cried all the way home, and most of the rest of the day. I was truly devastated. I hadn’t had the labour/birth I’d wanted (ended up with an emergency caesar), I couldn’t do most of the looking-after of my baby, and now they wanted to take from me the one thing I could do for her! It just seemed unbearable.

Sophie had other ideas. It was a week before I could bring myself to say, “OK, let’s try some formula.” And then Sophie didn’t want to touch it – she was 15 weeks old and obviously had developed a taste for boobyjuice, and nothing else would do. We tried everything – even (shamefully) trying to starve her into drinking it. We lasted 3 hours – and all three of us were in tears. She just refused to have it. And then she started refusing to take expressed milk from a bottle, which she had previously done quite happily. It got to the point where she panicked when my husband handed me a teat (just the teat!) while she was in my arms. It was a horrendous few weeks, those weeks that we were trying to wean her.

But at the same time, I started seriously researching what was known (what little there is) about PLO. And I discovered that while most of the studies have involved women weaning as soon as they are diagnosed (and the trend is that 6 months after weaning, the PLO has completely reversed), nowhere did it say that those who didn’t wean got worse. And in one study, the women continued to breastfeed, and they all still got better. I started to wonder what would have happened to all those women if they had not weaned? There was no way to know…but for me, there was only one way to find out. So we made the decision to take the risk, and continue breastfeeding. In a way, it was an easy decision, because I had never wanted to wean in the first place, but it was also hard because I was putting my body on the line, quite literally. Some women, old and young, have applauded my decision, and others have expressed scepticism and concern over my apparent complete disregard for medical advice.

I don’t know what will happen into the future. I will have another bone density scan soon, and will be very curious to see what that shows. Sophie has been a “boobiful” girl for 7.5 months now, and I’d love to get to at least 2 years. For now, we’re trooping on with breastfeeding, and loving it. I haven’t had any more fractures, and am finally getting to the stage where I can pick her up and carry her, and generally be involved in her care, a lot more. We’re just getting on with life, with loving our precious girlie, and with being a family.

Filed under: Breastfeeding against medical advice, Breastfeeding while on medication

Comments

One Response to “A difficult decision – Kirsten’s story”

Charndra on March 13th, 2009 5:46 am

Kirsten,
thankyou for sharing your story, it truly shows well so many things – especially the value of doing more of one’s own research, even with supportive and breastfeeding-educated carers.

I am so sorry for that heartbreaking time when you were trying to wean – I remember the fears of potentially being told to wean I had when having a breast-lump investigated when Maven was 6 months (I was feeding him off the other boob during the ultrasound!) All was fine though.

I wash you well with your ‘boobiful’ girl who has demanded the good stuff – I have a feeding you’ll do well. I know I like to think that breastfeeding is a natural continuum for our bodies, and that the mechanisms in place will natural help us in time. Trying to say there that there are still many mysteries around breastfeeding, and mother-baby pairs like yours are helping discover more.

I’m glad to have leart about PLO from you today!

Charndra

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