Interview With Virginnia on Pregnancy and Lactation Associated Osteoporosis
According to Davey et. al. Pregnancy-and lactation-associated osteoporosis is a rare syndrome of spontaneous fractures occurring in late pregnancy or lactation. Early diagnosis and management is essential, because of the severity of the morbidity associated with these fractures. Prior to therapy, other reversible causes of osteoporosis should be excluded through adequate investigation. Treatment includes cessation of breastfeeding, the provision of adequate pain relief, and the use of specific osteoporosis drugs, preferably those with short-term bone retention. Although there is no persuasive evidence that calcium and vitamin D requirements increase during pregnancy or lactation compared to the non-pregnant woman of childbearing age, it is advisable to ensure that women are vitamin D replete during pregnancy and lactation .
Interview with Virginnia Gilham on pregnancy-and lactation-associated osteoporosis.** Virginnia Gilhams’ Biography:**
My name is Virginnia Gilham. I am 39 years old and live in Victoria, Australia. I am a mother to three beautiful boys aged 4 years, 2 ½ years and 10 months. At the age of 37, after suffering two vertebrae fractures, I was diagnosed with pregnancy-and lactation-associated osteoporosis. I went on against medical advice to have a third child and after his birth, another three fractures were found. In 2013, I started a Facebook Support Group for women who have been diagnosed with this rare condition. We just celebrated our 1st anniversary and have grown from starting out with only 6 members to now offering support to over 40 women from all over the world.
I am currently on leave from my educational career where I was a Leading Teacher at a local primary school. In 2004, I was awarded the Victorian Outstanding Primary Teacher Award as recognized by the Victorian Education Excellence Awards_. In 2011, I was engaged as a Curriculum Coach for a local school and my focus was to support all staff from Prep - Year 9 to introduce an Inquiry approach to learning. This role involved curriculum writing and supporting implementation. In 2012, I worked at Deakin University as a Tutor for Education Students. In 2013, when on Family Leave, I was awarded my Master of Education. I am currently in the process of submitting my Research Paper to be published in an International Journal._
**Virginnia how is pregnancy and lactation associated osteoporosis (PLO) diagnosed? Did you have spontaneous fragility fractures? **
It took many months to reach a diagnosis of pregnancy and lactation associated osteoporosis (PLO). At first, not realizing I had fractured, I sought help from a Physiotherapist and Osteopath. Treatments were excruciating and I was not improving so after approximately 8 weeks, I went to see my doctor who sent me for an x-ray. The x-ray revealed two fractures in my spine. The notes on the x-ray, recommended I be sent for a Bone Density Scan and the results showed that I have osteoporosis. My GP carried out a number of tests to see if she could identify a reason for my osteoporosis at such a young age. I was then referred to an endocrinologist who completed some further tests. No secondary causes for my osteoporosis could be found other than extremely low Vitamin D. That is when I was diagnosed with PLO; this was approximately 4 months after I fractured.
My fractures were spontaneous. There is not one moment or one impact that I can pin point when I fractured. I just remember a searing pain coming on over a few days. The pain was most intense getting in and out of bed. Each time I would experience agonizing back spasms, even with my husband helping me. The pain continued throughout each day and night but increased whenever I tried to lift my baby. My endocrinologist warned me that I needed to be extremely careful in all the movements that I made as something as simple as stepping off the curb could cause another spontaneous fracture.
How long did it take for your fractures to heal and what precautions must you take to prevent another one?
The healing process took an extremely long time for me after my first two fractures. By the time 8 months had passed, I was able to manage my pain levels with over the counter pain medication and heat packs. I must be extremely careful with all movements I make, especially those involving twisting and lifting.
**How is PLO treated? **
In my case, I was treated with Vitamin D and Calcium.
Is it necessary to add vitamin and minerals to your diet after the diagnosis?
At the time of my fractures, I was eating a dairy free diet. I was advised to begin including dairy in my diet again.
**What type of specialist do you see to treat this disorder? **
I see an endocrinologist. I was fortunate that my particular endocrinologist had seen one other woman with PLO. I found it reassuring that my endocrinologist had some experience with this condition. She was also excellent at sourcing research articles about the condition and she passed these onto me.
Are most women diagnosed with PLO checked for secondary medical disorders to determine if there is another cause for this bone loss?
Yes, as far as I know, most are checked for secondary causes as it is unusual to have osteoporosis at such a young age.
**I’ve heard that some mothers take bone loss medications that have a low bone retention rate, like Actonel, but I would imagine this is different for each mother. Did your doctor prescribe any of the osteoporosis medications and was it for a limited time? **
After my diagnosis I was offered three different treatment pathways. The first was to take only Vitamin D and Calcium and see how my body responded. The second was to take an intravenous bisphosphonate and the third was to take Forteo_ ®. I decided to initially go with the first option. A number of factors were considered when making this decision. The first was that if breastfeeding and pregnancy caused my osteoporosis, then I wanted to see how my body would go if I stopped the causes and started on Vitamin D and Calcium. The second reason was that there is only very limited research about the use of bisphosphonates on younger women and no research about the long term side effects of such medication._ Forteo is a relatively new drug so again the research was limited. I also had not ruled out the possibility of having a third child and unfortunately, my specialist could not give me a guarantee that such medications would not affect an unborn child. However, I must make it clear that I am in no way anti medication and I know these will be in my future. I am in contact with many women who have done extremely well taking medication and this gives me much hope for the future. Fortunately for me, after stopping breastfeeding, my bone density did improve.I am still in the osteoporosis range but my numbers are heading in the right direction. I hope they continue to improve.
Did you also need to stop breast feeding?
Yes. All three treatment pathways also involved stopping breastfeeding. This was absolutely heartbreaking. I did not want to stop breastfeeding, nor did my baby boy. I continued for a little while after being advised to stop as I simply could not face immediately stopping breastfeeding. I have now been made aware that not all women with PLO are advised to stop breastfeeding.As breastfeeding is such an emotional issue and is so strongly recommended, I do believe it is important that the medical community come to a consensus about whether or not breastfeeding should continue for mothers who are diagnosed with PLO.
How was your fracture treated? Did the doctor suggest any type of procedure, like kyphoplasty, or did it heal with time and bed rest?
At the time of my fractures, I had two beautiful little boys in my life; my eldest son, who was 18 months, and my newborn baby boy. Bed rest would’ve been ideal but this was impossible. Perhaps one of the reasons my fractures took so long to heal was that I had to continue on with life. My doctors did not suggest any type of procedure to assist healing.
Having a fracture during pregnancy has to be difficult physically. Did you need help taking care of your children during the painful recovery phase? Give us an idea of a typical day post fracture.
My vertebrae fractures occurred approximately 5 weeks after I gave birth to my second son. I needed assistance to get in and out of bed as each time, excruciating back spasms would shoot through my back. With a newborn baby, getting in and out of bed happens many times a night so this was exhausting for both my husband and I. During some days, I had assistance from my mother but for the first 8 weeks, I didn’t know that I had fractured so I continued to push on through the extraordinary pain. Looking back, I have no idea how I did it.
I also broke the neck of my humerus while I was 34 weeks pregnant.The positioning of this fracture meant that I was put in a cuff and collar sling. Any movement was very painful. This fracture meant that I could not care for my son who was 14 months old at the time. We both needed 24 hour care so my amazing mother came over every day to assist and my husband took over when he got home from work.
This disorder is considered rare; do you happen to know the statistics on the number of young women who may have PLO? I understand you have a Facebook group for mothers with PLO; has this helped to have someone to reach out to, while dealing with this?
The most recent statistics that I have heard is that PLO occurs in less than 1 in 1000 women. However, I think that it could be more prevalent than this. I say this because I have started a Facebook Support Group and in just over 12 months I have connected with more than 40 women from all over the world who have PLO. From the stories I have heard about how difficult it is to be diagnosed; I believe there may be more women out there who are suffering without their symptoms being identified as PLO.
The support group has been the most amazing comfort, source of strength and encouragement. I am fortunate to have an extremely supportive family but there is nothing that quite compares to the support that you can get from people who are experiencing the same reality as you. The women who make up this group are remarkable. We have much in common but our treatment pathways vary and each member is so supportive of the individual treatment plans that are chosen. We encourage each other during challenging times, share our stories, ask questions, seek advice, share treatments and celebrate successes and so much more. It is our ‘safe place’ and I consider each member a friend.
Can PLO harm a developing baby?
I am not aware of any ways that PLO itself can harm a developing baby.
Can you have more children after receiving this diagnosis? Are there any precautions you need to take if you have another baby?
I was advised against having any further children and certainly against breastfeeding. However, after much consideration, my husband and I decided that we would go ahead and complete our family with a third child. We figured that my body was probably in better shape than my last pregnancy as I now was aware of my vitamin deficiencies and had taken steps to rectify this situation. Throughout my pregnancy, my Vitamin D levels and Calcium levels were closely monitored.I had to continue to be very careful with the types of movements I made with my body and when lifting. My body actually coped well during the pregnancy and my pain levels only started increasing towards the end. However, my emotions took over again and I went against the advice of my endocrinologist and breastfed my baby. In the weeks after his birth, another three fractures were found.
How are you doing now? I understand that PLO may resolve at some point, is this what happened or are you still at-risk for fractures?
After sustaining multiple vertebrae fractures, I now suffer from chronic pain. This affects every aspect of my life, every day. Something that has surprised me about chronic pain is that I do not know what level of pain I am going to be in until I wake up each morning. Sometimes, if I push my body too far, I am in pain for many days afterwards.However, on the other hand, sometimes I can wake up with a high level of pain for no apparent reason. There is always pain; it is just a matter of severity. This means that I am restricted in what I can do. I must be careful with any twisting or lifting movements. For example, it is difficult for me to bend over to get the clothes out of the washing machine or lift the mattress to change the sheets on beds. I cannot do the grocery shopping as I cannot lift heavy bags. I cannot play with my boys in the way I would like. I can’t do simple things like jump with them, enjoy them running into my arms or hold them for long periods of time. Getting out of the house is really important for myself and my boys, but it does take a lot out of me. I am still at risk of spontaneous fractures, so must keep this in mind with everything I do. I am on pain medication which helps me to function.Most of the information that I have read states that PLO may resolve. However, this is not the case for me. My specialist has informed me that I will always have osteoporosis.
Having said this, I am also aware that even though my body presents me with many challenges, it is this body that allowed me to have three beautiful children. This is something that is denied to many this fact is not lost on me. I am also able to manage this condition and have hope that over time my pain will ease. My pain started to ease and become more manageable before I fell pregnant for the third time, so I am hopeful that this will happen again. This is my challenge and I know that with the supports I have in place, I can take it on. There are many others out there who face far greater challenges in life.
What would you like to tell young mothers about PLO?
My heart goes out to any other women who are in this situation. Dealing with this disease during what should be an incredibly joyful time with your new baby is hard to describe. If there are women who are experiencing severe back pain while pregnant or after childbirth, then I recommend that you speak to your doctor and insist on an x-ray or an MRI to rule out fractures (please be aware that sometimes an x-ray will not pick up any or all fractures and an MRI is needed). If your doctor will not listen, then find another who will. Unfortunately, PLO is so rare that many health professionals are unaware of its existence and therefore it is easy for our pain to be attributed to pregnancy and breastfeeding. Some women in our support group were told that they had depression and/or that their pain should be easing. It was not until months later that they found out they had fractured their spines. If you think that something is not right with your body then push for the necessary tests.
I hope that articles like this can raise awareness of PLO. It would be wonderful if Midwives, Maternal Child Health Nurses, Obstetricians, GPs and others in the medical field were aware of this condition so that if a women presents with severe back pain, the possibility of PLO occurs to them and can be explored.
I am also hopeful that now a group such as ours exists, with over 40 women diagnosed with PLO, that someone, somewhere will take up the challenge to conduct further research into this condition. We are keen for further research to be done into this rare condition, so that treatment advice can be provided with confidence and offer the best possible outcomes for our futures.
If you are suffering from PLO, think you may be or know someone else who is, and feel in need of support then please contact Pamela Flores so she can pass your details onto me. You will not be able to locate our Facebook page as it is set up as a ‘Secret’ page to protect our privacy. However, I am happy to respond to anyone in need via email and if appropriate welcome them to our Facebook Support Group. Likewise, if you are in the medical field and would like to take up the challenge of researching this rare condition, then please pass on your details to Pamela Flores and I will send a follow up email.
Thank you Virginnia for a wonderfully moving interview!
Davey, M. et. al. (Nov., 8 2012) Pregnancy and lactation associated osteoporosis. Retrieved 7-29-14 from https://www.jemdsa.co.za/index.php/JEMDSA/article/view/335/451
Pam wrote for HealthCentral as a patient expert for Osteoporosis.