Today was exciting. Today history was made, and I feel very hopeful that all the hard work that the doctors, researchers, and advocates are doing in the UK will pay off someday. I feel like I need to report on this event because it is a big deal. I was only an observer via a live stream, and this is my take away from the information presented, so if anyone would like to add in the comments or correct me if I’m wrong, please do!
Today the University College London EGA Institute for Women’s Health hosted a patient engagement day. The speakers included a consultant obstetric physician, a fetal medicine specialist, placental pathologist, a clinical fellow, and an amazingly brave CHI patient/ advocate.
Since this event took place in the UK, I woke up before 4 am in order to connect to the live stream and follow along. It was well worth it. So much was discussed, and if the recordings of the speakers are posted, I will be sure to share the link because the event was so informative.
Background information regarding CHI was presented such as the fact that CHI occurs in about 1:10,000 pregnancies. Thyroid and autoimmune disorders either in the mother or mother’s family are common, but not always the case. Alkaline phosphatase (ALP) has been shown to be elevated in about 55% of pregnancies with CHI, but was always elevated (> 600 IU/L) in cases of severe intrauterine growth restriction (growth <3rd percentile). ALP is therefore not a reliable indicator that CHI is occurring. There is currently no good indicator known. There is also currently no treatment that has been proven to prevent CHI.
Courses of treatment were discussed, and the frustrating thing about treatment, other than there not being a proven successful protocol, is that there are treatments that are offered that seem to work sometimes for some women and there really isn’t a rhyme or reason as of yet. Corticosteroids and aspirin are enough for some, but not others. Hydroxychloroquine seems to work in some, but not other pregnancies. Blood thinners are used, but they might not actually have any benefit. Supplements such as Wobenzyme N are marketed by touting great success, but where is the proof? Women in our situation are likely to grasp for anything and everything that will increase their odds, and it is frustrating that we really have no idea if we are helping or hurting. (To be clear I don’t endorse herbal remedies and especially ones that sound too good to be true. None of the speakers endorsed herbal remedies either.)
I was most interested in learning about Tacrolimus. It’s the new shiny thing in the world of CHI, and my doctor had mentioned it potentially being prescribed in my future pregnancy. The obstetric consultant spoke about Tacrolimus protocol and commented that he only knew of his two patients in the UK, one in the US, and then one in the Netherlands. Tacrolimus is mainly used in transplant patients and has been used in hundreds, if not thousands of pregnancies in transplant patients, but use for CHI is largely uncharted territory. He discussed using Tacrolimus, a low dose Prednisolone, Fragmin, aspirin, and vitamin D.
Discussion of symptoms during pregnancy also took place. There were many who had had flu-like symptoms for a week during their pregnancy, but others had not. I had not had any flu-like symptoms, and something that has continued to bother me is the fact I had no negative symptoms that could alert me that something was wrong in my pregnancy – I was blindsided. Someone brought up urticaria and it struck me that I had an itchy foot – Is this a possible symptom that should doctors should be made aware of as a sign CHI could be occurring? I didn’t have an itchy rash or hives during pregnancy, I had written off my itchy foot as a sensation caused by increased blood flow. If others are reporting they had itching, perhaps this is something that should be noted for patient care. I’ve been struggling with hives starting a few weeks after my loss, and I had previously never had hives before, so clearly my immune system has been triggered and is in overdrive for some reason, but why?
What made today especially exciting is that the UCL is starting research on CHI and was able to collect blood samples from attendees with a history of CHI in order to discover a biomarker for CHI – something that can tell us if we are predisposed to having CHI occur and enabling future generations to prevent loss from CHI. They are looking for the cause of CHI – finding an antibody that can then be used to create an anti-CHI antibody could potentially unlock a successful treatment. Currently, mothers have to endure a loss before they know about CHI, and that is absolutely heartbreaking. I really hope that the research being done can lead to the day when that is no longer the case.
My absolute respect and appreciation goes to those who made today’s event and the ongoing research possible!