Hi gang!
Would love to hear from any of you who’ve had a baby either pre or post MPN diagnosis. Were you on any treatment at the time? How was delivery handled? Did you have any interventions because of your MPN? As many gory details as your willing to share are welcome 😂
Thanks 😊
Hi, I got pregnant with my second child 6 months after being diagnosed with PV, treated with daily aspirin. I was on daily Dalteparin injections in run up to delivery and for 6 weeks (I think) after and had consultations with Haemotology & Gynecologist through the local hospital as well my usual consultant at Guys in London. Didn't make any difference to my birth experience beyond having to be in a hospital rather than home or birthing centre in case of complications. Biggest challenge was communication between midwives, local specialists, GP and consultant, keeping everyone in the loop and getting regular bloods shared between them all proved rather trying but got there in the end!Good luck!
Hi Sarah, My daughter is now 3 years old and I was diagnosed when she was 3 months old. My high platelets were missed until I was 27 weeks pregnant even though they were in the 800’s. I had a very complicated pregnancy full of very unusual issues. I had an elective caesarean after a preeclampsia diagnosis - which seems a more common complication in women with ET according to research I’ve seen - I lost a lot of blood during the procedure but this is likely to be because I have the Cal-R mutation with very high platelets which is more likely to cause bleeding complications. Had I been diagnosed before my pregnancy and managed accordingly I’m sure that I would’ve avoided a lot of the issues that I encountered. Unfortunately for me I had to add Hydroxy to my treatment programme so due to this and my age I was unable have another child so I have no experience of a pregnancy and birth whilst having my condition actively managed. Good luck on your journey.
Hi Irish Sarah,I have MPN ET it was diagnosed when I was 18. I was initially put onto Hydroxyuria but this did not agree with me so went straight over to Interferon. I fell pregnant at the age of 29 and this took a long time to conceive. The actual pregnancy I was very healthy monitored more frequently, interferon dose adjusted quite a bit. They noticed that my baby was small and would be a small baby and at 36 weeks I started to feel unwell. My skin was itching terribly all over had a urine test which showed protein, went to hospital and they said I had pre-eclampsia. I stayed in to be monitored but felt more I’ll each day high BP terrible headaches so was induced with C section. My son josh was born at 4Ib and spent a month in NICU with me not being able to see him till I was better took about 2 weeks to get my Bp down and feel well and we left hospital after 6 weeks.
I would say your def able to have a baby on treatment with an MPN but things may not go quite as smoothly as someone without, my pregnancy was fine and felt well just a lot of monitoring and dose tweaking.
I was diagnosed with ET through investigations after a couple of miscarriages. When I then got pregnant again they put me on Pegasys, daily baby aspirin, and daily blood thinner injections. I had monthly scans and what felt like many many extra appointments to keep an eye on me and baby. They decided to induce me at 38 weeks as they were worried baby’s growth had slowed. Despite all that I had a pretty uneventful pregnancy and birth! Baby was in fact normal size/weight and is now a cheeky/happy/troublesome four year old!
My 2 sons are now in their 40s so my story may not relevant to practice today. First soon was by elective cesarean because of my grossly enlarged spleen at the time. Spleen taken out and then second son was induced as i was losing weight. 2nd son put on weight really quickly once out and both healthy strapping lads. No medication first time as the docs didn't believe the blood test results. I loved being pregnant both times- no complications. Good luck
Hi Sarah, I had a complicated pregnancy but the important thing is that we all ended up fine. I had severe preeclampsia that went into hellp syndrome and a 30 weeker. The specialist does seem to feel that the MPN had involvement, although many people without an MPN develop the condition. She feels that having an MPN raises the risk factor for these kind of issues.
Hi! I found out I had PV thanks to the blood counts taken at my first OB appointment. (JAK2, TET2, ASXL1+) I had a complex pregnancy due to the little dude’s birth defect (that had nothing to do with my MPN). He started having issues during a non-stress test at 36+6, so I had a surprise C section.
It’s a little hard to differentiate what portions of being pregnant were harder due to his weirdness vs mine, lol. We had more appointments than average, and I definitely got more used to needles. They just had me on daily aspirin during. The C section healed up great. I had to take Lovenox shots for 6 weeks after birth. A little stingy, but not that bad.
Little guy did me a solid - the whole time I was pregnant, my pruritis was gone. Before conceiving, I thought I had developed an allergy to something… I spent a year trying to remove things from my routine to find the cause. From the 2nd trimester on, my symptoms were pretty much under control, and my blood counts were perfect. I experienced a good amount of fatigue, but it was around the realm of “normal pregnant person who also cut out all caffeine.” After he was born, as my blood counts started to become abnormally high again, the pruritis came back with a vengeance. Only starting Pegasys made it finally go away.
I didn’t experience trouble conceiving and had no miscarriages. I realize I’m very lucky in that regard, especially since my RBC, WBC, platelets, and hematocrit were high.
MPN Specialist
MPN Specialists
MPN-U or MPN Unclassifiable
