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

Please post here your experiences of MDS as a patient, carer, family or friend

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

Post by Milly » 06 Mar 2015 16:19


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 who can give me any indication of possibilities etc.

I am 39 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 my 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 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. 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.

Can anyone offer guidance or experience of this kind?
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Location: South East England

Re: 12 weeks pregnant with 1st child and diagnosed high risk

Post by MollyP » 07 Mar 2015 09:04

Hi Milly
I am sorry to hear of your situation and can truly understand how you feel. I don't have any experience of MDS and pregnancy and the MDS I know is not me but my husband.
You need to be in contact with Sophie, best telephone her I suggest, typically today is Saturday. You will find her contact etc by looking on the main forum page.

http://www.mdspatientsupport.org.uk/for ... ?f=3&t=429

When my husband was diagnosed I thought we had very little time left together, what transpired was he is still fit and very well two years on, and, he had had MDS for about five years (discovered by a specialist looking at his previous blood tests).
Working together with our local oncologist and Kings Hospital I feel we are in the best place now regarding care and treatment.
i hope you get some answers soon
Best wishes
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
Posts: 25
Joined: 23 Dec 2013 13:18

Re: 12 weeks pregnant with 1st child and diagnosed high risk

Post by janbev » 07 Mar 2015 14:57

Hi Milly,
As Molly says phone Sophie on monday and talk to her - most members will tell you she has been a godsend to them at times and guide you where to go and who to speak to inorder to help you see your way through this. Like Molly its my husband who has MDS but having had pregnancy problems (long ago) I know how much this is formenting you. Both a termination and a miscarriage are devasting but with a miscarriage you cannot blame yourself. In the spring edition of Leukemia care magazine there is an article called Me, my Bump and CML which you might find interesting. I would also speak to Macmillan nurses and Leukemia Care. Leukemia Care have a 24/7 care line 08088010444. Talk to as many people as you can as well as your husband/partner and then when you feel calmer and have thought it all through make your decision. BUT before you start any treatment that will affect your fertility ask about having your eggs stored - they offer it quite often to men but I don't know if it is routine to offer it to women.
In the meantime remember that everyone on this site are there to suppot everyone else and all of us who have read your post are thinking of you and sending you our best wishes.

Janet N - Husband diagnosed with RCMD July 2013. On watch & wait. Low neutrophils, low white blood cells. At present on 6 monthly hospital check ups
Posts: 52
Joined: 15 Apr 2010 16:56
Location: Stoke Poges, Bucks

Re: 12 weeks pregnant with 1st child and diagnosed high risk

Post by Russell » 09 Mar 2015 07:57

Hi Milly,
I'm so sorry to read your post. It really is a unique set of circumstances. I can't offer any guidance but I know there are many on here, and on the Facebook page, that will be willing you on. As previously posted, do get in touch with Sophie.

Best wishes,

Age 55
RCMD 2009 at age 49
1x MUD BMT 2010
1x MUD SCT 2010
1x Haplo Transplant 2010
4 Marathons
4 other Half Marathons, a 10 miler and a Spartan Race!
Posts: 630
Joined: 01 Dec 2009 21:52
Location: Essex

Re: 12 weeks pregnant with 1st child and diagnosed high risk

Post by chris » 13 Mar 2015 22:55

Dear Milly
I was so sorry to read of your recent diagnosis and the difficult decisions you are facing. Life really can be so unfair. In order to make your decisions you need to be sure that you have full and accurate information and maybe a second opinion from a Centre of Excellence for MDS would be helpful? Sophie can advise where your nearest one is or check this website. Maybe also it might be helpful to talk to a counsellor -Macmillan or NHS -who can help you clarify your priorities? Your partner will also need to be involved as well as family members who might be supporting you at this time.

I wish you well.

Best wishes

Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
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