12 wks pregnant with 1st child and diagnosed high risk MDS

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• March 6, 2015 at 11:52 am #26558
  mallissaann

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  Hi

  I’m searching for anyone who may of been in a similar situation that I now find myself in as there seems to be no one medically qualified in the UK who can give me any indication of possibilities etc or experienced in my situation.

  I am 39 from the UK and waited my whole life to meet the right person to have a child with, I didn’t wait due to career choices, it was purely down to my own principles of believing I wanted the right man and it was for life even though I know that things change I wanted to be sure in myself.

  Well in the first week of January I discovered having met the right man that we are expecting our first child, understandably we are elated, however I started feeling very tired, continuously dizzy and run down with this constant pulsing in my head. I asked my midwife on my first visit and she advised to arrange for blood tests with my doctors for anaemia, this I did immediately. I had the tests in the morning and at 5 that evening the doctors phoned me and told me to go straight to hospital and I needed a blood transfusion without delay. I followed my instructions and went to find I had a blood count of 5.1 and needed at least 4 pints of blood transfused into me, after 3 more sets of bloods I was transferred to another hospital for a bone marrow sample.

  To my horror it was explained leukaemia cells (12%) were seeping into my blood and they needed to find out why, after an anxious wait the consultant told me I had MDS and was high risk to develop AML. My choices were to terminate the baby I longed for all my life and be treated with aggressive chemo and follow with a stem cell/bone marrow transplant or take the chance in waiting.

  Here’s where the confusion started, no one can give me clear indications of how this will affect the baby, how long it may take to develop to ‘frank leukaemia’ (consultants words), if there’s treatment available apart from supporting me whilst pregenant etc etc. I understand that all these questions are hard to answer as it was explained to me the MDS experts had never come up against someone my age and in the first trimester of pregnancy with my set of unique circumstances. My consultant contacted an expert in Hull of the UK who says that I’ll terminate before 14 weeks naturally, or if this doesn’t happen at some point along my bloods will go to low to support the baby further along and terminate. My platelets just a week and a half ago were at 27 and I was told there was nothing I could do to naturally help these increase yet yesterday they’d miracously gone upto 41.

  I think anyone can imagine the torment I’m now going through. I know that I have to decide myself and the consultant assures me she will support me whatever my decision, but I’d really like to find anyone out there who faced this dilemma and what the outcome was or if any experts around the world have treated someone in a similar situation.

  I think I will hate myself for the rest of my life if I terminate this baby but if mother nature decides it’s not meant to be I could accept that, another consultant has told me that the treatment drugs and course planned will leave me with less than a 2% chance of being fertile so that extinguished the any glimmer of hope I had if I did go down the route of termination medically and fertility treatment isn’t appropriate, ovarian tissue freezing is still in it’s experimental stage here and I can only find one clinic that perform it.

  Can anyone offer guidance or experience of this kind?

  March 17, 2015 at 8:26 am #26668
  mdsfound

  Moderator

  Dear Mallissa Ann,

  Thank you for your question regarding the recent diagnosis of MDS. Your case does present a number challenges, and is a rare situation indeed.We can not provide you with specific treatment recommendations as these are determined by a full review of your clinical data and a face-to-face evaluation. What we would suggest is that you consider a second-opinion with an MDS expert at one of the Centers of Excellence. The MDS centers in the UK are listed here https://www.mds-foundation.org/mds-centeres-of-excellence/. If you would also like me to assist by arranging a preferential appointment for you, please contact me at ahassan@mds-foundation.org. The most important first step is to confirm the diagnosis, which will then provide you with a better understanding of prognosis and what you might expect.

  We would also suggest you seek consultation from a high-risk Obstertrics provider to discuss the detailed management of the pregnancy and the risks of infertility with treatment. Ideally, these two specialists would work together to manage your care.

  Our heartfelt wishes for strength in working through this very difficult situation.

  Best wishes,
  Audrey

  • This reply was modified 9 years, 1 month ago by mdsfound.
  June 24, 2015 at 12:22 am #26959
  Linsey Gillespie

  Participant

  Hi Melissa Ann. I’m sorry you find yourself in this situation. My first pregnancy was similar. That was when it was discovered I had thrombocytopenia. My platelets then hung out around 50. My hemotologist put me on prednisone, eventually I was taking 90mg daily. Then I did IVIg. None of these had the desired results and my platelets were always around 50. So then it was platelet transfusions as needed. My baby did not live though. She was stillborn at 35 weeks. I do not know specifically what caused her death, but I am sure the prednisone at that dosage was not beneficial to a fetus. I did go on to have two healthy children though, but I never accepted IVIg or prednisone while I was pregnant. After my third child is when my bone marrow began to fail all around and was diagnosed with MDS.
  This is a really bum situation you are in and from my experience all I can tell you is that you need to do what is right for you. The doctors are not the ones who will live with the guilt of termination, if you know that is what you will feel. Also, you need to take care of yourself at the same time, and no one can blame you for doing that. Take the advise of the doctors, ask lots of questions, research. There is no easy answer. You have my heart felt best wishes too.

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