Dear Stevie,
I apologize in advance for what is going to be a boring medical jargon-filled post. My doctor called me yesterday with the results of all the blood work they did at my postpartum appointment a few weeks ago. If you recall, your autopsy determined that you were a perfectly healthy little girl and that you most likely died when blood clots formed in all three chambers of your umbilical cord. The initial blood work they did right after I delivered you came back negative for all the common blood clotting disorders, but after running some more tests, they've determined that I do, in fact, have a couple rare disorders. If I remember correctly (I've only talked to my doctor about these results over the phone so far!), I have two copies of the MTHFR gene mutation and one copy of the PAI-1 mutation. What the heck does that mean, you are probably wondering? Don't ask me! I have googled the crap out of them, and I am still pretty much clueless. :)
From what I do understand, these two "conditions" make me at higher risk of developing blood clots. I have never had any issues with clotting before, and all my blood levels came back normal, so it appears that the MTFHR/PAI-1 disorders "lay low" or are "dormant" most of the time, but decide to wake up and cause all sorts of trouble when I am pregnant. Pregnancy in general puts anyone at a higher risk of having clotting issues, so add that to the fact that I have these two disorders, and you have a recipe for disaster, I guess.
I am kind of relieved to know that there is a fairly clear medical reason for why you died. a) because now that we know I have these disorders, we should be able to treat them and prevent what happened to you from happening to any of your future siblings, and b) because it makes more logical sense to me. It's easier for me to wrap my head around what happened, to be able to say, "okay, I have these rare blood clotting disorders. No one knew I had them (and there was no reason to suspect I might), so I was not treated for them. Because I was not treated for them, they caused clotting in your umbilical cord, which, in turn, made you die." I don't like it, but it does make more sense than saying, "well, my baby just died for no reason," or "my baby died from blood clots, but we have no idea what caused those clots to form."
So where do we go from here? Well, for starters, my doctor told me to start taking Baby Aspirin right away (apparently, taking a low dose of Aspirin helps thin the blood a bit). Once I get pregnant again, I will be put on daily Heparin injections (or Lovenox; I want to ask about the differences), starting around 7-10 weeks. I think I am going to ask for a referral to meet with a high-risk OB Gyn, just to get a second opinion on this "protocol." Then I guess it will be nine months of worrying and hoping and praying that this doesn't happen again, and that I get my living, breathing "take-home" baby at the end.
Like I told Dad yesterday, when I found out I have these gene mutations,"I can't believe it--I'm a mutant! Kind of like one of the X-Men!" I just wish I had a cooler mutant "power." Why couldn't I have the storm-making power, or the power to walk through walls? Or maybe sweet retractable blades coming out of my wrists, like Wolverine? I'm pretty sure the ability to make blood clots that have the power to kill babies is the worst "mutant power" of all time. (Sorry for the horrible X-Men comparison--I'm a bit of a closeted super-hero geek).
If anyone out there in Blog Land has any experience with the MTHFR or PAI-1 disorders, or Heparin/Lovenox injections, I'd love to hear your feedback, advice, or stories (especially if they involve happy endings!)
I'm so sorry, Baby, that Mommy has these crappy disorders that made you die. I promise, if I would have known, I would have done everything in my power to protect you from them. I love you so much, Stevie girl.
Always and forever,
Mom
PS. You made your TV debut last night on the 10 O'Clock news! More on that experience later, but for now, here's the video of the news story: http://wcco.com/video?id=80940@wcco.dayport.com You are famous, baby! :)
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40 comments:
I, too, have two mutations of the MTHFR gene. I was told the same thing - baby aspirin, lovenox shots and also mega doses of folic acid because the mutation keeps our body from absorbing the folic acid. I don't understand why doctors don't test for this in the very beginning. It seems so many who have lost their babies also have some sort of clotting disorder. So, why not test? It seems so simple.
Hugs,
Kerry
WOW. That is so inspiring that you were on the news sharing your story. Years ago women didn't get to speak out and share or really have any outlet for healing or expression. I am so glad you got the opportunity to share Stevie's story.
WOW - Reading your story is liking reading about my life. I too lost a baby at 26 weeks of pregnancy due to blood clots in the placenta. His name was Owen Chistopher. This happened 2 years ago this past January 9. When I got pregnant again I had to take baby aspirin and be on Lovenox in the beginning and they switched me to Heparin at the end. Once you get pregnant again they will monitor you very closely. I was going in to the doctor every two weeks in the beginning and every week after 26 weeks. It is very scary. But now I have a healthy 17 month old little boy. Good luck to you! Mary
After 5 of my babies died due to clotting they *finally* did bloodwork for me and found MTHFR. I did not have to do heparin, just baby aspirin - but it did do the trick for me! I now have 2 healthy living daughters who are outside playing in the sun in the backyard right now. I had a lot of bleeding / spotting early in my HEALTHY pregnancies in my first tri, because of the aspirin. Just a heads up. After a loss seeing the blood is terrifying - but it meant things were OK, in my case. Good luck!
Hi there,
Came to your blog through another. I am so very sorry for the loss of your little Stevie
I just wanted to say that I also had a thrombophilia panel done after losing my son. His placenta had a retroplacenta hematoma. I was asked to wait 2 months post partum as having been recently pregnant can affect the results.
I am not sure if this is the rule specifically for MTHFR or not.
But in my case my lupus anticoagulant levels came back high. I did a repeat a month later and they came back normal.
Just a thought.
Gloria
OH - By the way you mentioned above about the differences between Lovenox and Heparin. Lovenox is longer acting so you only have to take one shot a day. Heparin is shorter acting so you have to give yourself 2 shots a day. They switched me to the Heparin at the end just in case you have to have a c-section. Which I might add I did. The little bugger decided to turn breach sometime the last week of my pregnancy and I just happened to go into a rip roaring labor the day they noticed it so they could not get him turned to take him naturally.
I had DVTs and a PE 4 days after giving birth to my second daughter last October and was put on 100 mg injections of Lovenox every 12 hours for 3 months. Tests results were all negative,which was a shock considering my dad and sister have Factor 5 Leiden mutations. For my future pregnancies I will have to do the Lovenox injections again, a smaller dose, for the whole pregnancy. Im pretty nervous about the whole concept- well just the almost year of injections mostly but I know thats what it will take for me to safely have any more kids so I just try not to think about the shots until I have to! I am thankful that things did happen as they did for me. My heart goes out to you for your loss.
I would like to say what an inspiration you are! I have not experienced a loss (just an early on miscarriage), but I've been following your story since I saw it on BBC. Your wanting the rational answers reminds me of myself. I know you're not on the same page as God lately, but I will be praying for your strength. Stevie Joy is a beautiful little girl and should be proud to call you Mommy.
After 3 early miscarriages and a DVT after ankle surgery, my doctor finally decided to have blood work done. It was found that I have the MTHFR gene mutation also. I am currently 32 weeks pregnant and taking only baby Aspirin. I am so sorry to hear of your loss and hope that you have a healthy pregnancy very soon.
I have a blood disorder called Factor II Mutation, which means I am at a higher risk for blood clots and can't take any medication that has a side effect of blood clots (i.e. birth control pills). I didn't find out about this until after I'd had my 4 kids (I'm very lucky that I never had a p.e. after delivery...statistically, I should have) and decided to take the pill (which did cause me to have a pulmonary embolism). Since then, I've had to take lovenox post-surgeries and taken Heparin when flying on planes. One thing to note, just in case your insurance doesn't cover the drugs, is Lovenox is WAY more expensive than Heparin. I know you will take whatever the high-risk O.B. advises, just wanted to give you a heads up. I didn't notice much of a difference in the drugs, but my Dr.'s insisted I take Lovenox post-surgery and not Heparin. I guess it can break up clots as well as prevent them from happening.
Im so glad that they were able to tell you something from your blood work. Were these tests that your doctor ran "just because?" I'm wondering if I should ask for them as well as we still have no answer.
Angela, my doctor did a full blood work-up (testing for all the thrombosis disorders...) because of the clotting I had in the umbilical cord. I would ask if they can test your for sure for the MTHFR. It's my understanding that there are variations to the mutation and it seems to be the cause for many miscarriage/later pregnancy loss issues. I really wish they would test everyone for it with the rest of the initial prenatal blood screenings they do (right now they only test you for it if you have a family history of clotting disorders or issues in the past--which I didn't). If I would have known I had these things, I could have been treated and I'd still be 34 weeks pregnant. :(
Thanks everyone for your feedback!!
I'm glad you were able to get some answers! After I had Alexandra, I was tested for every blood thing in the book since my doctor suspected it had something to do with my blood clotting too fast...but after all the tests, they all came back normal. Ugh! But...this time around, I am being treated with baby aspirin. No lovenox or heparin yet. I hope you'll be able to be treated for your next pregnancy and you get to bring home a healthy, screaming baby. (((HUGS))))
Kristin, you did great in your interview. Stevie would be proud to know her mommy is making a difference.
KRISTIN!!!! I'm so excited that you were on the news! I want your autograph!
Thank you so much for sharing your Stevie with the rest of us. I want you to know that if it wasn't for YOUR blog, I don't know how I would've survived my loss. You opened up the door to an entire world I never knew about, one that has contributed greatly to my healing.
I hope you understand how much you and Stevie have touched people's lives-mine included.
I was testing for everything yesterday...will know in a few weeks...my protocol for future pregnancies whether test show anything or not will be prednisone, baby aspirin, blood thinner and progesterone injections.
Jen
Hi, I just found out I have the one gene mutation MTHFR on the C677 (i think?) gene. I have to take a special pnv when i start trying again, i've had two miscarriages. I love your blog, thanks for sharing.
Here is another resource for parents who have received an adverse prenatal diagnosis:
http://www.prenatalpartnersforlife.org/
(they have a Facebook group, too!)
Hi Kristin -- My sister lost her first child at 39.5 weeks. After the autopsy, they ruled her daughter's death "inconclusive." Absolutely nothing looked wrong, and my sister didn't have any indication that she had pre-existing health problems that could affect an unborn baby. They ran a battery of tests on my sister following her loss, and discovered that she has an MTHFR mutation. Today, she has two wonderful, healthy, feisty boys! During her next two pregnancies, she was on Lovenox injections daily and was switched to Heparin towards the end [as a previous comment mentioned, the Heparin clears from your system more quickly]. With both boys, she was induced at 38 weeks as a precaution. I know that one day you will be able to add your own "happy ending" story to others like this!
im back!! ok iAM SOOO sorry that you didnt know before, but hopeful not that you DO that things in the future will be different...I 'swear' i have this too , and even had my dr test AGAIN because i swear i do, i am still waiting for these results, you may have read in the blog the results from everything else from 2 weeks ago. YOU are not a mutant!! Unfortunately this F'n MTHFR was only discovered a few years back and is NOT even in prenatal testing until AFTER 3 m/c or a stillborn (hate the word) but its true...you are a good mommy...I wanted to let you know i thought of stevie today!! in my new house, the back yard is really big, the neighbors across have this HUGE tree and as soon as I looked at it I thought of you guys, once I settle in im going to take a pic for you...that is ONE reason i came to the blog, number two is that my interent is NOW working...have you been ok?? besides these results?? i have been logging into FB through my cell and have not seen a status from you...but i do it at night so maybe that is why...sorry this is long, just wanted to give my two cents, that are now like 50 cents lol
Words cannot express how sorry I am for your loss. It is unimaginable and so unfair. I had a miscarriage with my first pregnancy and I remember everywhere I turned - and especially at Target - there were pregnant women. It seemed most appeared to be teenagers so ill-prepared and that seemed to be a double-whammy. Then a good friend from college was about to announce her 2nd pregnancy and, thankfully, a good friend called to tell me about it in advance. I felt like the air had been sucked out of the room, I dropped the phone and just sobbed uncontrollably... how unfair, she already had 1 baby....
Your blog is amazing and will provide comfort to so many others and is hopefully therapeutic for you as well.
My thoughts and prayers are with you and your husband and your precious daughter.
Wow, how wonderful that you were able to share your story on the news! You've given Stevie such a powerful voice.
As for clotting issues, I've been tested for everything as well. Different doctors tell me different things, which is maddening. I'm heterozygous for MFHFR but it's unclear if that's the problem or not. There's really not a lot of hard science here. Even with Stevie's cord clots, it's so hard to say for sure that what caused it. So impossible to say what could fix it next time. I've been told to use Lovenox next time, if there is a next time as I'm now infertile and doing IVF. Cord problems are an obsession of mine thanks to double cord-related losses. There don't seem to be many answers out there, or even many people really asking questions. Glad you're out there talking about it. Would love to meet up with you sometime since we're in the same area!
Dear Kristin and Andy,
I was one of your nurses during your labor with Stevie Joy, and saw you on the news tonight. I have often thought about both of you and there you were... on TV. What a wonderful story!!! I didn't know you had a blog. I hope you don't mind that I looked at your blog. It's so lovely and inspiring.
I'm happy to see all your letters to Stevie Joy. I get emotional reading some of them. I love the beautiful pictures of Stevie Joy (and you and Andy)too! They are so full of the love you both share for Stevie and each other.
How are you both doing? I saw your post today...hang in there. I know it sounds scary. Though now that it's been identifed, it can be managed quite well during pregnancy. Please don't think you're a mutant. The lab bloodwork will most likely determine if you will need lovenox/heparin. I hope that this gives you encouragement, as well as the postings from those who have gone through this.
I truly hope you both are doing well. I hope you are finding peace in your hearts, and sincerely hope, that someday, all your dreams will come true. You both are still in my thoughts and prayers.
Many blessings to you both & your families.
My daughter was diagnosed with PAI-1 last year after losing her baby boy at 26 weeks. We didn't know she had the blood clotting disorder until she lost Jeremy. Her doctor, like yours, found it after doing additional testing. My daughter got pregnant again in September and started taking daily injections of Lovenox at 6 weeks. She also learned that she had an incompetent cervix, so at 13 weeks she had a cerclage. She spent about 4 weeks on bedrest and the remainder of the pregnancy on modified bedrest. Beautiful Kaitlyn Nicoletta was born June 8, 2010, at 27 weeks. It doesn't ease the pain of losing Jeremy and we are coming up on the one year anniversary of his birth/death on July 14. I wanted to share her story to let you know there is hope. We were on pins and needles the entire pregnancy, but it was worth every bit of pain the second we saw Kaitlyn. Best of luck to you. Your blog is beautifully written and I'm sure it is helping so many others.
Not that it makes it easier, but I am glad you have a clinical reason for why you lost little Stevie. And now you have have an action plan for the next time you become pregnant.
I really wish they would check for things like this routinely. How many babies could have been saved??
Love Stevie's name picture in the sand, by the way...
Kristin, I've been reading your blog since we "met" on babycenter..our due dates one day apart. I, too, had the orange swimsuit with the built-in innertube (for reference.)
I haven't posted much on your blog primarily because I have followed along in your journey and didn't want to be yet another reminder of something so tragic and difficult.
I have read, cried and been angry right along with your journey.
You are a strong, strong young woman and I often smile reading your blog. I don't even think YOU recognize how much strength you have...you are vulnerable, honest and so in touch with ALL of your feelings--even when they're yuck.
I'm truly heartbroken for you and I'm glad you have a few answers to help for the future...ironically, one of those disorders called "MTHFR" seems like a good word for it. Mother F'er.
xoxox
Kristin! Oh my gosh! I have MTHFR as well! I have been meaning to contact you, as soon as I read that you said Stevie had a clot in her cord, my first thought was that maybe you have what I have. My sweet Avery died from a clot in her cord at 25 weeks. Yeah, same thing. Not fair. I know. Please, if you ever need someone to chat with, rant with, complain to, vent to, I am here for you!!! I am only a couple weeks ahead of you in this terrible journey we've both been thrown on, so I am here for you for anything whenever you need! Much love and hugs to you!!!
I'm so glad you finally have some answers! That has to be such a relief, even though it doesn't change the fact that your sweet Stevie had to die because of all of this. But I'm so glad you got some answers before you lost any more babies from this. My friend Lisa, that I left her blog address in my comment a couple minutes ago, lost 4 or 5 babies before the doctor finally determined what her "problem" was. In fact, she just got her answers a couple months ago, close to a year after her last baby died! Anyhow, after knowing all she went through, I'm soooo thankful you got answers right away! Having definite reasons/answers/meanings like that makes things so much easier to grasp, which makes putting trust in God so much more difficult, or at least I think. But that's a whole 'nother topic.
Sooo, my point in saying all that is I'm glad you got the results and answers back. And I'm glad there is a way to prevent this in the future. Thank the Lord!
What you've been through is so terrible- I'm sorry.
I had my one and only 4 years ago- so things may have changed a bit since then. I had a DVT at 14 weeks, had a full work up, with no answer as to why this happened. They think that it is genetic but admitted that they don't have a test for whatever runs in my family yet. The scary thing for me was they never once mentioned that my baby could be at risk.
Here's my experience with being on blood thinners during pregnancy- I realize that everyone is different....I was on Lovenox injections once daily from 14 weeks on. I was monitored to make sure that I didn't swing to far in either direction one every couple of weeks. The injections were easy, the needles are so small that if done right, the injection was painless. Towards the end I did end up with a lot of bruises on my tummy and thights that hurt. Other than that the baby was fine and I really didn't notice any other side effects. However, delivery was tricky because I couldn't have the blood thinner in my system and have an epidural. I was put on Heparin just before delivery because it processes out of the body faster. Come delivery time, that didn't happen and I received the epidural much later than I'd hoped for. I wound up having a c-section and had to continue the blood thinners after delivery to make sure I didn't develop any other clots. This caused problems with healing, and I had issues with hemorrhaging under my stiches.
Hugs- what you are doing to remember your daughter is beautiful.
Hi Kristin--
This is Lori, and I'm the mom who emailed you last week and mentioned that I lost my baby girl, Hope, at 35 weeks. Her autopsy indicated nothing, but my blood work also came back with the info that I was MTHFR heterozygous. This means I inherited one gene and not the other and this MAY have been the reason for Hope's death, but its not conclusive. So, I understand your confusion and fear. But, you know that I have a happy story in the end.
When I got pregnant with Charlie, it was a little over a year since Hope had died. I was definitely scared but I had been through much counseling and some medication that helped me cope. I was on lovenox too, which was really not bad at all, and also on B-6, B-12 and Folic Acid supplements. The first few months of pregnancy were pretty good, it was summer, and I could feel no movement yet. But, when movement started, I'm not going to lie, it was very hard to think about not having movement after losing a baby. But, my doctor let me come in every day for the last couple of months just to ease my fears and that helped so much. I had an amazing doctor that really understood my issues. I was induced at 36 weeks, but Charlie was doing sommersaults and was breach, so I had a c-section, which was also fine. I now have a beautiful 5 month old Charlie, and I know in my heart of hearts you will have your own baby someday. Just trust that this MTHFR thing can be treated and you now know what to do. If you would like my doctor's info, please send me an email. Thinking of you on your two month mark--it never leaves your heart but it does get better. Just have Hope!
Hi I posted a comment earlier saying I had just had a bunch of bloodwork done. Well I got a phone call today...I have 2 mutations of the MTHFR and I also have a abnormal hbA1c (some diabetes test) So I am being referred to a hemotologist and an endocrinologist.
I have had 3 miscarriages in the last 4 years after having 3 healthy and normal pregnancies-1 in first tri.-then a twin pregnacy where one of my babies died at about 20 weeks(jessica was born healthy at 39 weeks despite her twin dying)-and most recently a miscarriage at 15+ weeks.
Dear Kristin,
I am so sorry for the devastating loss of your beloved baby girl Stevie. I remember reading about you both on BabyCenter.
I thought I'd bookmarked your site but I hadn't. I just happened to Google pregnancy, MTHFR and PAI-1 and found you again!
I lost my first pregnancy for reasons unknown (I had developed a subchorionic hematoma) and have since discovered that I have homozygous C677T MTHFR and heterozygous PAI-1, as well as autoimmune thyroid disease.
This pregnancy (I am now 16 weeks along) I started on Lovenox but quickly developed an intrauterine bleed. Two weeks on strict bed rest cleared it up, thankfully, but no more Lovenox for me. I've been taking 1 daily baby aspirin and boatloads of folic acid, including a generic of Folgard, two tabs a day.
I started spotting red blood last week and freaked out. My doctors told me to stop the baby aspirin temporarily till next OB appointment.
I've done a LOT of research on these blood clotting disorders and would be happy to share what I've learned (Ledazan2@yahoo.com). I highly encourage you to seek out a high risk obstetrician/ perinatologist and hematologist for your care during any future pregnancies. In addition, a reproductive endocrinologist can do a full panel of testing if you feel every base hasn't been covered (e.g., testing for immunology, other blood clotting disorders, etc.).
God bless!
Hallo beauty girls
and sorry for my bad bad english
I am from Bulgaria and i am 21 years
I have 3 abort
1st is on 5 week - i have too much pain inmy stomach,too much blood all day was in blood,when i go o wc i saw one litlle bloody pint like meat :/ later my doctor say this is ure baby but he/she is not there :/
My doctor make abrazio ...And say this is a nature may is good maybe he baby not be in good helth. I cry 6 monts :/
2 abort in 3 week - Litle like pice like litle point,no pain litlle blood no abrazio.
Doctor says :well i dont know what hell worng here whit u after 6 monts make new baby .
Now 2011 years i have pregnant
And on 10'may i saw her/his litle point body
so cute i s too happy but
On 11'may i have bad day i saw like dejavu
like scary movie ..Pain blood and ....
Now i make NK and MTHFR PAI
My NK is good
Ond 25 jully i must saw my trombofil and did i hae mutation or no :(
I am scared bored lonely my psychic is down
i cant life enymore i am envy because is too bad wen never feel da baby kick or baby hug ..
A cant eymore if i ant be a mother i think i must put a gun on my head.
Thank you for sharing your story. I can upon it after searching for MTHFR + PAI-1, as I have both of these gene mutations also. I also have lupus and have had 3 m/c. 8 w 1 d (missed miscarriage), 6 weeks (natural at home) then a chemical recently. I haven't seen a specialist yet, but none of my doctors I have seen (Hematologist, Rheumy, etc) will pay any mind to the MTHFR or PAI-1 results. I had the tests performed back in 2005 when I was in college, and no doctors will repeat these labs to have a solid copy. Please, can you offer any advice to get them to pay attention.
So yeah, I know this is an old thread, but I have to share this in case anyone comes along this like I did. I am also homozygous for MTHFR (2 copies) and have PAI-1 (4g/4g--apparently the worst kind) but like you have had no problems except for pregnancy. I have had 8 miscarriages, 1 medically necessary abortion and 1 micro preemie as a result of these disorders. We didn't even find out about them until after my 5th loss. Not only do you need to take extremely large amounts of folic acid (10 times the normal amount...) but ALL B VITAMINS (folic acid is a B vitamin) are not readily absorbed by our bodies when we have these disorders. That caused my 7th pregnancy to result in acrania which is a neural tube defect. Neural tube defects are often caused by vit b dificiencies. No one could tell me anything about these disorders and I was so confused. I was put on Lovenox daily and baby aspirin and took tons of vitamins. My final pregnancy was very tumultuous with all my bleeding problems and clotting issues. But Im glad to tell you, I had my daughter at 31 weeks, 2lbs 4oz but she is doing amazing. Just wanted everyone to know you are not alone! There are many of us out here with both mutations, and have healthy babies (even if the road is long, and like a roller coaster sometimes). Thank you SO much for sharing your story.
This post is soooo old but I'm wondering if you'll still get the msg. I had a healthy daughter 8 years ago- followed by a string of mc's and blood tests -And now have a 2 year old son, using just baby aspirin. I am compound hetero and and pa1 too. I stayed on aspirin postpartum,but weaned myself off bc I was having serious nosebleeds once I wasn't pregnant. The info seems conflicting about treating this "gene" outside of pregnancy. Do you continue to treat your disorder- with asp and or folgard?
Just to clarify- I am compound hetero for mthfr-one a and one c- and homo for pa1. I can't remember the details of the pa1 bc it was so long ago, but it was a "mild" variation according to the fertility clinic.
Hello! I am so sorry for your loss, I know what pain this is.
Two months ago I gave birth to my angel girl Maria. I was 31 weeks pregnant...after 2 years of trying to get pregnant. That was the worst day of my life, body pain and soul pain.. She had a brain hemmorage. But why would a healthy, big baby have something like this? Today I got my results... PAI-1(4G/5G), MTHFR A1298C, and MTRR A66G, all heterozygot. Placenta results aren`t done yet...
You blog gave me hope, because you have a healthy baby now. I hope someday i`ll have a baby too.
I send you a big hug, from a mother of an angel to a mother of am angel.
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