My story
I developed post-surgical hypoparathyroidism due to neck surgery, when my parathyroid glands and thyroid gland were removed 35 years ago due to thyroid cancer. I am raising two children whilst managing this extremely rare condition.
In my case, not only do I live with hypoparathyroidism and hypothyroidism-without-a-thyroid, I have also developed chronic kidney disease through prolonged use of medication to treat symptoms when what I really need is my 'missing parathyroid hormone'. I rely on regular blood tests at the hospital (due to no home test option) and a symptom management routine; thankfully it keeps me stable for the most part. I also carry a medical emergency card for those ‘A&E' moments.
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In 2013, my experience of being pregnant with my son, Rafael, raised a lot of questions about the lack of knowledge and support for pregnant women with hypoparathyroidism. I was very unwell after my first pregnancy, due to the effects of hormones, breastfeeding and interactions with my medications, and my serum calcium rose to dangerous levels. None of my physicians warned me about this risk and my medication was not initially adjusted to compensate for the fact that lactation and breastfeeding can cause calcium levels to rise.
I wrote about my experience with Rafael’s birth for the pioneering patient organisation, Parathyroid UK. As a result, in 2015 the European Society of Endocrinology (ESE) added a section (2.4) on ‘Pregnancy and breastfeeding’ in the first ever clinical guidelines on managing hypoparathyroidism in adults. Parathyroid UK contributed to the patient information leaflet accompanying the guidelines, with a photo of me holding Rafael as a newborn.
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Fast forward to 2020, and I was pregnant with my daughter, Maya, during the COVID-19 pandemic. My bloods were meant to be monitored every three to four weeks, however antenatal care was severely compromised while the UK was under lockdown. In nine months, I had just four blood tests. No midwife visited me during my pregnancy, and I had one physical check-up a few days before delivery.
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Due to my experience with Rafael, I was aware of how unwell I could become with hypercalcaemia. I tried to communicate this to the clinicians in charge of my care but my requests were largely ignored because of a lack of awareness about hypoparathyroidism and pregnancy. Both my daughter and I became very unwell and were re-admitted to hospital. My endocrinologist was forced to stage an emergency intervention before I received the correct medical care and it took months for me to stabilise.
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After my experiences giving birth to Maya and Rafael, I decided to set up Hypopara Mums, as well as the Facebook support group ‘Hypopara Mums’ during lockdown 2020.