Friday, April 25, 2014

Infertility Awareness Week-Day # 5: Male Factor Infertility

Let just be honest, most of the time when couples are struggling with infertility we automatically think it's an issue with the female reproductive system. We rarely think about male factor infertility. Just like a woman whose body is failing them to either produce or carry a baby, a man can also suffer from feeling inadequate about his ability to reproduce if he has been diagnosed with an infertility problem.

Most of the time the problem lies with the sperm. Duh. But it can vary from low sperm count, to poor motility, to abnormal morphology. I'm just going to keep this real and simple. I've never broadcasted this before-but male factor infertility is one of the issues we are also dealing with when it comes to own reproductive issues. It has not prevented us from GETTING pregnant, but it could certainly be one factor leading to our recurrent miscarriages if an abnormal sperm is the one who is fertilizing the egg.

The good news is that there are ways to make sure only the normal sperm are fertilizing the eggs. The bad news is that you can only make sure of it by doing IUI or IVF with a procedure called Intra-cytoplamic Sperm Injection where they look for normal sperm under a microscope and take just one normal sperm per each available egg and manually fertilize the eggs in this manner. This is what we did when we went through our IVF cycle. This was an added cost to our cycle but it was also required by our clinic due to doing the pre-implantation genetic screening.

IF we choose to move forward with egg donation from my sister (if she does not have a translocated chromosome too), I am hoping that the clinic will allow us to do IMSI (intracytoplasmic morphologically-selected sperm injection) instead of ICSI because IMSI is an even more advanced way of ensuring the lab is using only normal sperm to fertilize the eggs, which could decrease the amount of DNA fragmentation in a developing embryo. We still have a lot of DNA fragmentation in our 4 growing embryos that we had from our last cycle...and I guess if we are really going to put our money towards another cycle-we might as well to everything we can to make sure we are producing the best quality embryos that we can. In the mean time, my husband is finally taking the vitamins he was recommended to take, so we hope that helps him to produce better quality sperm for the future.

Thursday, April 24, 2014

Infertility Awareness Week-Day #4: Infertility is a Disease

A fellow woman who I have met in an online support group compared the experience of Infertility and Pregnancy Loss like the experience of being diagnosed with a terminal illness such as cancer. She went to school to become a doctor and she has endured years of infertility and lost her first and only daughter just three hours after birth. While neither of us have been through cancer treatments, I think it is a good way to look at things.


I started writing my opinion on what it would be like to go through cancer as an adult or to watch my child go through cancer...but I erased it because I don't think it is my place to assume what it must be like. Just like I would expect anyone who has never experienced infertility, miscarriage, stillbirth, or child loss to assume what that must feel like. 9 times out of 10-we would never be able to come close to describing how someone else feels going through something we have not experienced ourselves.

That being said-infertility can feel like a terminal illness sometimes. Just like being diagnosed with cancer-there is a cycle of emotions your go through: fear, devastation, anger, depression, hopefulness, excitement, acceptance, determination, helplessness, and defeat. One of the worst parts of infertility is the financial burden it causes due to lack of coverage from insurance companies. Some couples spend an upwards of $100,000 in an attempt to have just one child. That alone is traumatizing...adding so much financial debt when you already feel like your you are drowning emotionally.

The fertility medication can have so many negative side effects and can sometimes cause more problems. For example-I have always had regular cycles (28-30 days) prior to going through our IVF round, and now this month I am 6 days late with no signs of starting my period and I'm not pregnant (we weren't trying anyways). My IVF nurse has mentioned the possibility that I could have ovarian cysts which are preventing me from starting my period. Great. Add another medical issue to our list of infertility problems....one that developed BECAUSE I used fertility medication for one month and one month only. If my period doesn't start by Monday they want to do blood work and an ultrasound to see if I do have ovarian cysts. This alone makes me scared to even try egg donation with my sister because I would not want her to develop the same side effects and have issues later on when she does try to have more of her own children! Not to mention the fertility medications make you super emotional because of the rapid hormone changes in your body. They cause hot flashes and can cause you to go in premature ovarian failure due to overstimulation of your ovaries. IF you are LUCKY-the medication will HELP you have children...but remember, not ALL women are blessed with the same fate when going through infertility procedures.

When someone goes through cancer treatments they are fighting to save their own life. When someone goes through infertility treatments they are fighting to create a life to add meaning to their own life. In a sense...they are fighting to save their life. Some women start to feel like if they can't have children there is no point in them living. Some women whose bodies fail to protect their precious baby's life feel like they have nothing to life for anymore-especially after having multiple miscarriages or stillbirths. They have to cope with recurrent nightmares, flashbacks, intense fear and anxiety that sometimes feels like they are having a heart attack, and feeling like no one in their circle of friends and family can understand their emotions.

I personally feel like I have been fighting to a never ending battle against this disease. I feel like I am at war with my own body. I feel like I have been beat down and bruised up so many times that my whole body should be black and blue. I feel like my soul is dying to be completely honest. I breathe, I walk, I talk...but I barely smile and I'm rarely happy. This disease has stolen so much from my life that I will never be able to get back, because we can't bring our babies back to life. It has caused me to live a life of fear, constantly worried that no matter how we get pregnant the next time my body will fail us again. It has caused us debt that continues to increase because every potential option we choose costs another $20 grand. This disease has traumatized me, and it has traumatized so many other women around the world too. Don't ever think there is a simple quick fix to infertility-just like there is no simple quick fix to cancer.

Wednesday, April 23, 2014

Infertility Awareness Week-Day # 3: Write your Story on My Heart

My blog has been viewed 23, 311 times, but I rarely get a comment on my actual blog site.  Today, in honor of "bump day" in the pregnancy world-I want to hear about your struggles with infertility and/or recurrent pregnancy loss.  I want to challenge you to write your story on my blog, which has been a symbol of my heart. I want you to educate the world on how different infertility looks for everyone, what you have been able to overcome, and what you are still dealing with.  Share your infertility journey with me so I can be inspired by you, so I can pray for you, and so I can celebrate with you.

This blog has freed me to be honest.  It has allowed all the words that I wish I could say out loud to be spoken in writing.  I has brought me closer to some family members.  It has given others an opportunity to talk to me about what we have been going through.  It has connected me to so many other women who are struggling with the same battles.  And I hope that it has inspired others who may or may not being dealing with infertility and recurrent pregnancy loss.

I encourage you to allow yourself to be freed too! Let it out...let it all out, right here! You can post as an "anonymous" person, with just your initials, or with your actual name.  However you decide to post, I can guarantee you will feel the weight of the world lifted from your shoulders! I can also guarantee you that you will inspire at least one other person:)There is no need to be ashamed of your story-it has made you the incredible person that you are!






Tuesday, April 22, 2014

Infertility Awareness Week-Day #2: Humor Yourself



Going through infertility is one of the most emotionally exhausting experiences a women can go through. So when I find myself slipping into that deep depression and self-pity that is so easy to fall into, I like to humor myself a bit. Let me share my humorous side with you!

For all the ladies in the Trying to Concieve world:





For all the ladies who are using or have used Clomid:


For all the ladies you have heard this advise from their fertile friends:




For all the ladies with very fertile family members and friends:



For all the ladies who CAN get pregnant and have experienced Miscarriage or Stillbirth:


For all the ladies with children concieved through IVF:

For all the ladies who have NO insurance coverage for fertility treatments:


For all the ladies going through IVF:


For all the ladies who have been married and trying to concieve for at least two years:


For all the ladies who have undergone several unsucessful rounds of IVF and FINALLY having their first successful IVF:


For all the ladies who have experienced Progresterone injections:


For all the ladies who have yet to to be thrown a baby shower and have an opportunity to decorate a nursery:



Disclaimer: Infertility is not a funny disease. But if you can't beat it, you might as well join it.  The reality is-all of these pictures have an underlying serious message those of us struggling with infertility wished other people would understand before offering advise and oppinions

Monday, April 21, 2014

Infertility Awareness Week-Day #1: You are NOT Alone

 A couple going through infertility often feel so alone in their struggle to become parents. The reality is-you are NOT alone. You are surrounded by friends, family members, coworkers, strangers on the street, and people around the world who know exactly how it feels when your body fails to do what it was designed to do. You do not have to go through Infertility alone.

1 in 8 couples are diagnosed with Infertility




1 in 4 couples experience Miscarriage














If you are under the age of 35 and it has taken more than 1 year to become pregnant, you have experienced infertility. If you are over the age of 35 and it has taken you more than 6 months to become pregnant, you have experienced infertility. If you had had more than one miscarriage, you have experienced infertility. If you have used medication to induce ovulation, you have experienced infertility. If you have used assisted reproductive technologies such as IUI and IVF-you have definitely experienced infertility.




The great thing about the society we live in now is we have social media which opens up so many avenues for support. There are numerous support groups for Infertility and Pregnancy Loss, including group that are specific to your type of infertility or your type of pregnancy loss. There are even groups specific to your type of infertility treatment.

Do yourself a favor-reach out for support. Reach out to an online support group. Reach out to a friend or family member. Reach out to a coworker. Reach out to someone's blog you have read. Do not convince yourself to you are alone in this battle. You will save your sanity and you will free yourself from the chains that hold you down in this battle if you just reach out to someone who understands the way you feel.

We are in this together. Peace. Love. Hugs. And Baby Dust.

Friday, April 18, 2014

Outside the Square Box

In the medical world, doing the minimal amount of tests to find a diagnosis is always preferred-to save the doctor time and to save the patient money. I've said over and over that I feel like I've been given the easy "textbook" answer for why I have lost my four babies. "Oh, you're daughter was born with the cord wrapped around her neck-that's why she died." "Oh, your son had Down Syndrome-that's why he died." "Oh, you have a translocated chromosome-that's why you keep having miscarriages. Your daughter must have had a chromosome issues then and died from that, not a cord accident after all."

It's been excruciating to know that I'm not the only one in my family with a translocated chromosome, yet I'm the only one in my family who can't carry even one baby to term. From the day they told me we miscarried our son because he had Down Syndrome, I didn't believe them. After losing our forth baby who also had Down Syndrome-I was willing to try the IVF with pre-implantation genetic screening but I was honestly terrified it wasn't going to work even if we got pregnant with a genetically normal baby because I really thought there was something else going on that the doctors didn't want to look for just because I'm a textbook case for recurrent loss based on having a translocated chromosome.

Well-yesterday I had my phone consult with Dr. Braverman in New York. He asked about my pregnancy and medical history. Immediately after I told him Riley was born with her cord wrapped around her neck he said "that's not why she died." Then I went on to tell him about my three first trimester miscarriages and how the last two were confirmed to have Down Syndrome and how I have a translocated chromosome. I also explained that this chromosome has been passed down throughout my family but I'm the only one having problems with recurrent loss. According to Dr. Braverman, he agrees with me....there must be something else going one where my body is not "baby friendly." He said if the translocation was something specific to me, and no one else in my family had it, he might be able to say that is what has been the cause of our miscarriages....but since it's not just me that has the translocation-it's time to do some digging and get outside the square box that I've been put in by all my other doctors.

Dr. Braverman recommended having an OBGYN order the bloodwork that he would like done, because he cannot order it himself unless we go to New York to see him. He told me if my OBGYN agreed to collaborate with him, he would email her the tests he needs order, I would get the blood drawn in Ohio, and then the blood would be sent to the lab in Boston and he would get the results sent to him to be analyzed. He would prefer us to come to New York to go over the results and a treatment plan, but could also email the results to us.

So the only problem we have at this point in time is to find a doctor who would actually be willing to order these labs for me. I've had a different OBGYN for every pregnancy due to living in different cities each time I was pregnant and due to my third OBGYN refusing to see me after learning I had the translocated chromosome. I don't want to go back to my last OBGYN practice because they 100% believe the chromosome issue is my only problem, plus I now have insurance through the hospital network that I work for. So I'm taking the suggestion of my coworkers and cousin and I've scheduled a "pre-conception consult" with an OBGYN in our hospital network that I have heard wonderful things about. I am hoping that she will be on my side and will agree to not only order these labs to check me for immunological factors that could be causing my miscarriages, but I am hoping she will agree to check me for endometriosis as I have had a strong feeling lately that I could have it and it is what is causing my progesterone not to rise correctly during pregnancy.

My appointment with Dr. Sharma, the OBGYN, is scheduled on April 28th. My sister gets her chromosome analysis done on April 23rd. I am hoping that we have my sister's analysis, my immunological blood work, and my laproscopy completed before we meet with the new fertility clinic on May 13th. I'd like to know all these results so we can make a more definitive treatment plan for future conception rather than having another fertility doctor tell me it's just the chromosome issues we should be worried about.

Right now-we just continue to pray that one way or another, we will have our Rainbow Baby in our arms by next year sometime.

Monday, April 14, 2014

In My Doctor's Eyes

As I have shared many times before, in April 2012 I was diagnosed with a rare genetic disorder called Homocystinuria. It affects 1/350,000 people worldwide. It is a genetic disorder that is present from birth and is acquired with both parents are carriers for the gene mutation that causes the disease. Long story short-I have two gene mutations which make it difficult for my body to metabolize certain amino acids (proteins). Specifically-I cannot metabolize methionine which is high in meat and dairy products. I was lucky to have lived 25 years with the disease without it causing me to have blood clots, stokes, heart attacks, seizures, and learning delays. I was lucky the disease was found when it was, since research shows the disease will most likely result in death in not treated before the age of 30.

When I was diagnosed and discussed our desire to create a family with my genetic doctor, he informed me the disease is linked to recurrent miscarriage and stillbirth due to blood clots in the mother, the placenta, or the umbilical cord. I was told I would need to follow a strict diet, take food supplements, and be compliant with medication daily to get my disease under control. When we became pregnant in November 2012 I was told I was need to start blood thinner injections daily for my entire pregnancy the moment we heard the heart beat, which I did. In January 2013 my homocysteine level had been cut in half from 100 to 50 during the 2 months I was pregnant, and my doctor was very pleased with how I was responding to the treatment of my disease. When we miscarried our baby at the end of January I was determined as hell to get my level to a normal range, which was thought to be impossible for a patient with Homocystinuria. Normal Homocysteine should be between 5-15. By August 2013 my Homocysteine level was 14 so I was thrilled when we found out we were pregnant in September that my Homocystinuria was completely controlled! At the beginning of October my level was 10-my doctor and nurses were absolutely amazed with how well I was doing:)

Then we found out a week later we had miscarried another baby...our 4th baby. I honestly gave up. I stopped caring about my diet. I stopped taking the medication. I was so angry that I had done everything right and we were going through the pain of losing another baby that we wanted so badly. It was the entire month of November that I just gave up on myself and said 'the hell with it.' Once we were notified we were selected for a Baby Quest Foundation grant and decided we were for sure going to try IVF with pre-implantation genetic screening, I pulled myself back together and my by the beginning of January my Homocysteine level was 20.

Since finding out our IVF cycle was a complete failure, I have really struggled with taking my medication and food supplements. I've honestly been in a state of depression, feeling like no matter what I do right-things just keep going wrong. I've had major anxiety about the future, worrying that perhaps it's not the translocated chromosome we should be worried about and perhaps there's an issue with my body being able to carry to term.

I went to see my genetic doctor today to discuss these concerns with him. We discussed all four of my pregnancies and where I was at in the state of my Homocystinuria disease. I broke down and started crying when I talked about Riley's birth and how we just accepted that the cord strangled her instead of doing testing on the placenta to see if see had a chromosome issue or if there was a blood clot in her placenta or cord. I used to have closure about her death and now I just don't-there were other reasons she could have died that we will never know...and I am so angry that my doctor at the time took advantage of me being a naive 21 year old who wouldn't question a doctor's opinion. I wasn't diagnosed with Homocystinuria at that time, so my levels were likely in the 200's like they were when I was diagnosed at age 25. With the levels being that high, and being in my second trimester-it's very likely there was a blood clot that developed. However-like our maternal fetal medicine and fertility doctors, my genetic doctor believes Riley died because she had Down Syndrome or Trisomy 13 due to my translocated chromosome. He also believes my Homocystinuria has NOTHING to do with any of my three miscarriages, and he believes it would have NO IMPACT on me being able to carry a baby to full term, especially since my levels have been so well controlled within the past year. In fact-he said I am the IDEAL patient with Homocystinuria to be ABLE to carry a baby full term if we were able to just get pregnant with a genetically "normal" baby.

We discussed the history of this translocated chromosome in my family. I explained that I am the only one who has had problems with recurrent loss, besides my mother and father (dad has a translocated chromosome) who did lose three babies but also have 4 living children. My genetic doctor said every 1/800 babies are born with Down Syndrome each year, but 50% of babies conceived who have Down Syndrome are miscarried or stillborn. I just nodded my head in understanding.

We discussed my sister's offer to donate her eggs. My doctor offered to meet with my sister for a free genetic counseling consult to discuss her need to be tested for the translocated chromosome before we proceeded with this option, and he offered to order the chromosome testing in a way that her insurance would cover it and in a way that it would be cheaper on us (testing 5 cells instead of the usual 20). He asked me "if she is a carrier would you and your husband try again on your own since you know you can get pregnant?" I instantly started crying at this question, because truth be told-I am just terrified of creating another baby who I will become bonded to the moment I see the words "pregnant" on a pregnancy test and who could very well die. I'm scared to put myself through that again, and I don't think it is fair to our baby to create him or her if he or she isn't going to have a chance at life. And at the same time-there is the voice in the back of my head that says "of course we would try again."

I left my doctor's appointment in Columbus and drove to Dayton to go to work, crying the majority of the way there. I feel no better about myself after my appointment with my doctor than I did before my appointment with him. I continue to ask myself-"why me?" "Why were my babies the 50% that die?" "Why weren't my babies the 50% to live?" "Why haven't other family members with the same dang translocation suffered what I have?" "What the hell is wrong with ME?" In my doctor's eyes-its just bad luck. In my own eyes it feels like my body has failed me time and time again, and there is a constant fear that no matter what we try it will continue to fail me.

Thursday I will have my phone consult with the Reproductive Immunologist in New York I've talked about before. I am hoping he will be willing to do some different testing on me which will either give us answers or peace of mind. On Wednesday next week my sister will meet with my genetic doctor and get her chromosome screening done to see if it's even an option for her to donate her eggs.

For right now-these lyrics play over and over in my head.

I can take so much
'Til I've had enough

'Cause I'm only human
And I bleed when I fall down
I'm only human
And I crash and I break down