Perhaps they are not stars, but rather openings in heaven where the love of our lost ones pours through and shines down upon us to let us know they are happy.” -Eskimo Proverb

Yesterday, we met with the high risk specialist Dr. Mason, at St. Johns Hospital, to talk about future pregnancies and my MTHFR diagnosis. It was an enlightening and very reassuring visit for me because I have had a lot of questions.

For those of you who may not remember or know, MTHFR is a rare blood disorder which affects people by making them have potentially dangerous blood clots. It also makes people prone to stokes or heart attack. This is because the MTHFR gene when mutated, does not allow a person’s body to absorb folic acid properly and folic acid controls another chemical (with a very long name) which in turn controls blood thickness. (This was a lamens terms explanation). I am what is called a compound heterozygous carrier of the gene meaning I have one A and one C copy.

My MTHFR is what we believe led to Jack being born prematurely. Jack himself was just fine, he was just too little. However the Doctor’s think that I may have had tiny blood clots forming around my placental walls which tore into the sac thus causing me to leak amniotic fluid.

So, we went to the Doctors yesterday to find out what we are going to have to do if we ever are lucky enough to find ourselves pregnant again.

The Doctor looked at my file and asked me a lot of questions. He told me that I was absolutely smart to come in and see him now so we can develop a plan. He will be working to “co-manage” my next pregnancy with my normal OB/Gyn Dr. Finazzo. I asked him when he thought we should try again and he said he always recommends waiting 18 months because of the classical c-section I had. He said that with the classical up-down incision, there is a risk of the uterus rupturing due to it being a weak scar if I got pregnant earlier than that. I asked him what would happen if we got pregnant before then, and he said it would not be the end of the world, they would just have to watch me more closely. When he asked me about birth control, I told him I have never been able to take the pills, they mess with my system really bad. And he said, get this now, the MTHFR makes it so I can never take birth control pills. He said they will always react in my body in a weird way. I always wondered why I couldn’t stand them!

He then began asking me about my cervix. He said that he isn’t totally convinced that my cervix is just fine and that when I am pregnant in the future, he will do special scans to check its length to ensure it isn’t shortening prematurely. One option is to put a stitch on the end of it to help keep it closed, if that is a problem.  I am supposed to go back next week as well to have a sonohystogram done on my uterus and ovaries to check for polyps and cysts, just to make sure we are all good.

When I asked him what the procedure will be when we do get pregnant again he laid it out for me like this: I will continue to take the new meds he prescribed me, Folgard (sp?) which is a folic acid supplement combined with the B vitamins (I will take this for all of my life), I will also be given another special pre-natal vitamin to take daily, then I will have to give myself Lovonox injections into my abdomen each day (a blood thinner). Additionally, a progesterone injection regiment may be used depending on my levels (which they would test me then). As soon as I find out I am pregnant he said “get on the horn and call me, I don’t care what time it is”. He did say that because we got so far with Jack on our own, that was very encouraging.

Overall, the experience was very good. He said that from everything he could see with my case, he could do something about it to help us have a healthy baby. And, most of all, he was very sympathetic about our loosing Jack and you could tell he really cared. And that meant the world to me.

Wish us luck!

~Emily

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