Monday, April 03, 2006

Question: Treatment Results

I have been getting many e-mails from viewers of this blog. Most are from people who are either pregnant or trying to get pregnant. I would like to hear from some people who have tried blood thinners and vitamins as treatments. What is the success rate?

18 comments:

Will said...

Hello...my name is Will (28 y/o) and my wife is Heidi (31 y/0). We have a beautiful daughter who will be 7 next month. We decided to wait a few years until trying again for another child. In June of 2004 we found out that my wife was pregnant again. We were extremely excited about the new addition. The pregnancy was a little rough from the get, and my wife never had a good feeling, yet we still held onto hope. She had incidents of spotting and then bleeding, until the morning of Sept. 24th 2004. Like you, I will remember the horror my wife unleashed. She was using the bathroom as I was in the shower and passed what we thought was our son....at 24 weeks gestation. After fishing it out, I realized it wasn't a baby, but a huge piece of tissue. We rushed to the ER where they quickly hooked my wife up to a monitor...thankfully we heard the heartbeat. We were reassured that it was just a large clot that had pooled that she eventually passed. As we waited to hear from our OB, we still held onto hope. They then did an ultrasound that showed my wife's amniotic fluid was extremely low due to her water breaking. Apparently her placenta had abrupted and that is what my wife had passed. It was then told to us that our son would have to be delivered and there was no hope for him due to his lungs not being fully matured. We gave birth to him on Sept 15th...I held him as he took his last breaths. His name was Brenden William. We still miss him and think about him everyday.

We got pregnant again the very next cycle...it was quick but a welcome surprise and also helped out break out of the depression we were feeling. Unfortunately that pregnancy ended in a blighted ovum around 8 weeks.

April 2005...my wife has a very heavy period only to find out she was miscarrying again...apparently a chemical pregnancy of sorts.

We take a break from TTC. That was until October of 2005. She became pregnant again in December only to lose that pregnancy too around 5-6 weeks.

Finally we get a referral to a RE. After reviewing my wife's medical history, she informs us that our original OB tested us for MTHFR when we lost our son, and she tested positive for the homo mutations, yet never told us.

Ironically my wife tested positive for another pregnancy the day before our first RE appt that she had made 2 months prior, right after our 3rd miscarriage and 4th consecutive loss. She immediately started us on heparin 2X a day, b6, b12, folic acid, baby aspirin, and prenatals. We are about 6.5 weeks now and are waiting for our u/s this week and praying we see a h/b.

It saddens me that we never knew about the MTHFR my wife has until now. We may have been able to prevent 3 m/c's. But we are very hopeful that have a protocol that will allow us to give birth to a healthy child.

We also hold onto hope because a friend of ours also experienced 4 losses....was treated for the exact same homo MTHFR mutation by the same RE and just had her son this past December.

This just shows that women with MTHFR can & WILL have their babies even with this horrible condition. Just don't give up...and if you can't get your doctors to treat you for this...then find another one that will.

Your blog has also given me hope and I thank you for taking the time to share your journey. You're not far from holding your son safely and I wish you all the best. Please let your wife know that I am praying for your family!

-Will

Coloratura said...

Hi... I just wanted to leave a comment because your blog has given me hope as well! I just had my 3rd miscarriage and was just diagnosed as being homozygous for the MTHFR gene. These means I have not one, but two of the gene mutations. I am 41, so all the doctors prior to this said it was probably my age. Now they are saying it might be the MTHFR. I wonder if you would mind sharing how old your wife is? I'm just trying to gather data on age vs. MTHFR and see if I see what the success rates are for older women who take the meds they prescribe.

I am so happy for you and your wife. Believe me, I know the pain you have felt. We got to 9weeks and saw a strong, healthy heartbeat of 150bpm at 7weeks. We really thought we would make it... and now I'm wondering if we could have...

Anyway, thank you for sharing your story. It looks as if you guys are on the home stretch. Wishing you the best of luck in the weeks to come!

Take care.

Expecting Father said...

Coloratura,

My wife is now 25 when we first began to try she was 23. I am not sure how much of a difference age makes with the gene mutation, but we both wish you the very best!

Coloratura said...

thanks - and your baby room looks great! best of luck on 4/19!

Anonymous said...

I am at 22 weeks, on heparin injections twice daily, and so far things are going well. Baby is very active (today especially) and I've started to relax some about it all ( I miscarried 4 times prior). The story of you and your wife gives me hope. Your baby is a cutie and I'm happy things have gone so well for you. I will continue to hope for the same results for myself!! Congrats again!!!

Dru in Colorado

Anonymous said...

The first month we tried to get pregnant, I did and had my baby-girl Audrie-Laurel nine months later. I waited two years to have another baby and got pregnant within the first month and miscarried my baby at 7 wks. I was pregnant again three months later and had my second miscarriage within 8 wks. Again we tried and three months later again I miscarried within 8 wks. It was absolutely heartbreaking and I became depressed. My doctor didn't run any tests even on the third time and only said I was probably mistaking the pregnancy results from the kit at home.

I found a new doctor. and the next time I got pregnant, I had a blood test to confirm. Again, I miscarried. I heard the same story you did from your doctor about how so many women miscarry, etc. I told him I absolutely want every test they could do for me. He recommended doing extensive blood testing and said that he didn't think I would have anything in my results because I had already had a baby without problems. He was wrong and sat down to tell me that I have the MTHFR mutation. I was furious. I am trying again and on aspirin once a day, a high prescription dose of folic acid, prenatal vitamins. I am glad I found out from you about the shots so I can recommend them to the next doctor I find (I am currently in search for one). Your story was mine almost exactly in the details of what happened and I am so thankful I am not alone. Take care!

Anonymous said...

My husband and I have miscarried 3 times, the last being at 20 weeks, before they ran blood work. I have the double mutant MTHFR gene. We got pregnant 2005 and start ASA, B-complex, Prenatal vits, and Lovenox (Shots) 2x a day. October 2005 our little Isabella was born at 37 weeks healthy and beautiful. We are now 8 weeks pregnant with #2 and back to the same old therapy, hoping we have another healthy baby in January 2008. Congratulations and I hope you continue to get your story out there.

Anonymous said...

Thanks for the blog, and the comments everyone, I just found you. I'm 34 and my husband and I are TTC our first child. We've had 2 m/c in 2007, one at 9 weeks and one at 5 weeks. I got the blood tests a few weeks ago and was just told last night that I'm positive for the MTHFR stuff (not sure if single or double, I have more reading to do and questions to ask). I can't get in to see the Reproductive Endocrinologist until Oct 5 (!) at which time there is a possibility of another pregnancy coming and going. Thank you for sharing your stories, especially what you learned and the successes!!

Big Daddy D said...

Anonymous,

I wish that you had left an e-mail address so that I'd know you'd read my reply. Our doctor had told us that something as simple as a baby aspirin a day might have been enough to save the previous babies. Even if you are unable to see a specialist until Oct. 5th, please at least start taking baby aspirin and pre-natal vitamins. The aspirin will thin your blood a little, hopefully preventing clots in the placenta. The pre-natal vitamins will provide you with folic acid which affects your homocystine levels.

Anonymous said...

I'm 29 and pregnant with my first child. At 9 weeks I had n arteriole blood clot in my eye (retina). Testing ensued and I was found to be homozygous for MTHFR. My doc has me on baby aspirin but doen;t think I need any heparin/Lovenox injction therapy. My homocystine level is normal. Any thoughts or suggestions? How did anyone else get their MD to prescribe the heparin therapy? Has anyone had bad luck with heparin?
-Jessica

Anonymous said...

Hi,

I am also happy to find this site. It sometimes seems that we know more than the doctors. We lost our baby at 28 weeks and later found out that I have homozygous MTHFR. It was devastating. I did not feel a whole lot of movements and when we went to our class and other people discussed how often they felt movements, I became more concerned. When we got to the hospital, she had passed already, possibly even 1-2 weeks prior. My body did not give me any indications of any problems(bleeding, broken water, etc). The last ultrasound did say that they thought the baby was small for gestational age. The autopsy did indicate infarcts on the placenta so I can only guess it was from clotting. I am currently on high doses of folic acid and B vitamins. I suggest that everyone be VERY proactive in your own health and research. I found my doctor to be careless in several areas, particularly in this area since my sister had clotting issues (Factor V) and my father had major cardiovascular issues prior to my being pregnant. I am not sure why they don't test all pregnant women for these tests. Glad to hear the success stories; it really does give hope. Maybe we could all compile a group of websites for research. God bless.

Big Daddy D said...

Anon said, "Maybe we could all compile a group of websites for research."

Great idea. Please send a list and I'll post the links!

Anonymous said...

Hi there,
Congratulations on your baby.Encouraging to see that people with MTHFR can have successful babies.

I just wanted to let you know that
I have had two miscarriages.
After the 1st one which was at
4 weeks , I asked my doctor to doadditional tests and it was found out that
I have MTHFR C677T ( HOMO - 2 MUTATIONS). For which I was prescribed Baby asprin and Folgard. I remember asking my doctor for Lovenox, for which they just brushed me away saying that it was not essential. I became preganant but once again lost the baby at 13 weeks.

Seems like Lovenox is essential.
My current doctor recommends that
I be on 30units of Lovenox. He is not for it. But since it does not do any harm he is okay in prescribing this to me.

Can you please tell me how many units of Lovenox your wife was and
what was her dosage. Seems like the standard dosage is 40 units twice a day.

Anonymous said...

Hello! I am a MTHFR lady, myself. My husband and I found out after we had our healthy baby boy in 2007. I went for my 6 week follow up from the delivery. My OB said that they found blood clots in the placenta when they delivered my son via c-section. She ordered a genetic test which confirmed my MTHFR issues. My sister also has MTHFR and unfortunately had 2 miscarriages before finding out. She does have 3 beautiful little girls now. Don't give up hope if you are trying and don't worry...God has a big plan for all of us. I believe that my son is truely a MIRACLE! God's blessings to all you who are trying.

Mamamcb said...

I am so happy I found this site! Last month I gave birth to my daughter at 27 weeks. She died 8 days after birth. While being hospitalized the doctors found I am compound hetero MTHFR. My ob said he spoke with a perinatologist who said I would just need one baby asprin a day. Thats it??? Did I mention a clot the sized of my fist is what caused the abruption?
I am hoping my homocystiene levels will come back normal. I wont know till next monday. Even so I am going to make that doctor give me folgard and lovenox.
This site has given me so much hope! All the research I have been doing this past month has made me feel like I will never be a mom. Thank you, thank you.

marlayna said...

That is my post above. My daughter was born 3-3-11. I was on lovenox, baby aspirin and extra b vitamins. Treatment worked for us. :)

Lori Balloun said...

I have been pregnant nine times, and have only given birth to two beautiful children... I had another miscarriage three weeks ago, and I just found out today that I have MTHFR. We are going to wait a few years and try again, and hopefully it works next time. The dr told me that I should start prenatal vitamins three monnths before we try, and take a baby aspirin every day during the pregnancy.

Anonymous said...

Hello, I just found this site. My Daughter has had many m/c but has 5 healthy children.The last time she became pregnant at 42 yrs.Her lovely female Dr. gave,as she does every lady a test for MTHFR.Found out that she had it from both sides of the family.We hadn't heard of it 'til then. I only had one m/c thank the lord. I have had three healthy boys and one girl.I know that the main concern on this post is a full term pregnancy,it would ofcourse be mine if I was your age group.I am in my 70's and feel for all of you as my ambition when young was to have a happy healthy family. I love children.
If I could I would take care of some now.
Since finding out more about this condition I would like to help others to know that it also causes other problems among which are heart, stroke,and other blood related problems.Looking back on mine and my husbands family history that certainly bears this out!Everyone on my maternal side died of heart attack or stroke.His side all heart disease.
You got this mutation from someone older and being the caring people you are certainly would like your parents to know the dangers.Dr. rec. one baby asprin and 1 ml.folic acid taken at night(most h/a start early am). I am so surprised at the number of doctors and others in the medical field who do not know anything about this easy to remedy mutation, which is so potentionally dangerous.
I am wondering if this doesn't cause cleft pallette and other birth defects!Couldn't some of you youngsters get this atention in the newspapers or on the TV news? You could possibly save many heataches and even little lives.
Good days and many years to all of you.












































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