The International Council on Infertility Information Dissemination, Inc

Fertility from A Man's Perspective

First, no matter how much it the guys think it is, women always have a more difficult path. But for a man, there is still real difficulty. Because man will never carry a pregnancy, there is somewhat of a separation between the male perspective and the female perspective on infertility. With that in mind, let me share a little bit of my side of the struggle with infertility. About six months to a year after we married, my wife and I began the process of building our family. After a year we started asking questions as to why we had not yet gotten pregnant. 

I suffered with severe testicular torsion as a young teenager. So I began to think that may of had something to do with our inability to conceive. After getting a sperm analysis we found I had no sperm. Next came a surgical procedure. During the surgery, at University of Pennsylvania Medical Center, doctors found immature sperm in my testicular tissue and harvested it for implantation through use of the ICSI procedure.

Surgery after surgery and ICSI cycle after cycle; all our attempts failed. The quality of the embryos was never great and we always attributed it to the very immature (barely moving) sperm that was harvested via surgery (the only way to get any sperm).

The burden I carried felt huge. Just like many women, I felt my sperm, my body was failing us preventing us from having a child. It was a very difficult concept to wrap my head around and I was becoming more and more bitter. The experience of making a baby should be romantic and loving. Instead of this cold calculating repetition of failures. The clinic started having trouble  getting my wife’s hormone levels where they needed to be. After three failed cycles, the clinic had no answers for us. Our negative feelings grew so we started searching for a second opinion. We went to IVFNJ first and were absolutely turned off by their approach and lack of bedside manner. Then we went to RMANJ where we once again felt hopeful.

Two more failed cycles and we started feeling the air leak out of the balloon again. It was at this time that test results, scans and failed cycles were shedding a light on possible medical issues with my wife that could be further complicating our infertility issues. For a brief moment, I almost felt a sense of relief…it wasn’t just me after all. I wasn’t the only problem causing us to fail. That relief quickly turned to heartache…sorrow…feeling useless.

I have to say I am the "Fix It" guy. I am the problem solver. I am an educated man. I have a master’s degree, hold multiple certifications in my field and am the guy you want around when there is a problem that requires a solution. I am a solutions guy…no matter what the problem... I fix it!  Need help rebuilding a motor…call me. Have to figure out how to balance a $5MM budget…call me. Need to get a critical project done in an impossible timeframe…I’m your guy. Need someone to sing opera at your wedding or rewire your house or change the brakes on your car or give you advice on how to start a business…call me. But I couldn't find this solution. Instead my wife began seeing specialists in Illinois and New Jersey. She began researching clinical studies and trials. She began learning the lingo and challenging the doctors to look at every single aspect of her body. She sought out online groups to build a support system to help her as she advocated for herself and our future child. Her psychology background gave her insight into the clinical trials and reports that allowed her to be the best advocate for herself and for our future baby. So, you can imagine the utter uselessness I felt when I couldn’t fix our infertility. I just couldn’t figure out a way to advocate for a solution. Sure, I could give my wife shots and set up her IV for IVIg infusions. But, when it came to understanding the volumes of information about infertility…my wife carried the burden largely on her own and it was the hardest thing not to be able to fix it. 

That is where my struggles with infertility remain. I am never going to understand the female side of infertility as well as my wife.I cannot fix the problem…the fixer (me) is broken. All the King’s horses and all the King’s men cannot put Humptey Dumptey back together again. But one thing I can do is share the burden we both face because infertility isn't a his or her problem. It's a couple issue to fact together.

Now, I have long since come to terms with my inability to biologically father a son. Quite honestly, it is not that big of a deal. Through a very aggressive combination of therapies with multiple doctors, we were blessed to have a beautiful son in February 2015. He was premature due to complications with my wife’s high risk pregnancy, but he was healthy and after two weeks in the NICU, he was home with us. He was conceived with donor sperm and IUI with a multitude of medications to address my wife’s autoimmune issues, blood coagulation issues and inflammation.

I love my son unconditionally and with a full heart and he loves me back with that unconditional love one can only have in the mother-son or father-son relationship. He is my son and nothing can change that. For a fixer…it hurts that I cannot fix the infertility. But I share in the burden and we support each other because support is what I can provide. Even being trained in the healthcare field as a paramedic, infertility is something that largely goes over my head. Do I know more about it than the average Tom, Dick or Harry…sure. Do I know anywhere near enough to relieve my wife of the burden of having to advocate for our family all the time when trying to have a child…unequivocally no. That is my burden. That is infertility from this “guy’s” perspective.

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Barbara's Story: The journey was a long one

From a blog post Oct 2015
 
My dearest Leon, the Journey for you was a long one and a short one all at the same time. This journal I’m writing is a little different than the one I wrote for the Penguins, the embryo we adopted, and the triplets because you are the child that we get to hold in our arms every day and love on you and kiss you every day. I cannot picture any other child in our life and any other child to call us Momma and Dada.  However, it was quite the journey to get you.  Dada and I first talked about adoption when we were engaged.  We talked about how we wanted someday to adopt as part of our family-building process.
 
Dada and I were married in 2007. We hoped to start a family right away. However, it took us almost eight years of marriage for you to make us finally a Momma and Dada. In 2010 we started to talk about domestic adoption but the cost seemed to put that process out of reach. In 2012 doctors told us we would be unable to conceive.We explored about donation and decided to try that pathway to becoming parents. The cost was less.  Eight embryos transferred never resulting in a take-home baby. After our second failed embryo transfer we decided to start looking into domestic adoption  At that time we still had one embryo left and still wanted to move forward with that transfer while continuing to pursue private domestic adoption.
           In January 2014 we started a home study, asking friends and family to write reference letters, getting a letter from our doctor saying we are in good health and so on. In March 2014 we had our home visit with the social worker. Our home study was completed in April of 2014 and it was time to make fliers and try to get the word out that we were looking to adopt. We also held a few fundraisers to help with the cost of domestic adoption. 
            Dada and I spend one weekend in June driving all over Washington and Oregon posting flyers saying we were looking too adopt.  We made up business cards to pass out and put up with our flyers and we mailed flyers to friends and family in other states to put up where they lived. We made a blog page and a Facebook page. We wrote letters to Women’s Shelters, lawyers and gynecologists. We sent letters to any place we could think of to let people know that we are looking to adopt. We were not able to raise much money and received no responses.  We were also trying to move forward with our last embryo transfer but my doctor in Seattle was not letting us move forward at the time.
 
While waiting I bcame pregnant with triplets but miscarried all three at 8 weeks. Then three weeks after the miscarriage, our lawyer in Seattle called and said that there was a baby girl that was born that morning and the parents were looking to place her up for adoption. Our lawyer asked if we wanted our profile to be shown and we said yes. Then the next day our lawyer called and told us they picked another couple.
 
A month later, our lawyer called saying another baby girl was born that morning and did we want our profile shown: we told him yes. That baby was born early and had to stay in the hospital for a while, and it took her birth parents a week to decide to parent her.  Around the same time we got a call from someone that saw our Facebook page. She said she was pregnant with twins lived in North Carolina. She told us they wanted an open adoption. With living so far away we did not know how that would work having an open adoption so we said no. I found out later from a Facebook group that the North Carolina birth mom was a scam, and never even was pregnant. We also had two other people try to scam us
 
            In January 2015 I was getting ready for our last embryo transfer.  I had to get my body ready for transfer. On January 15, 2015 the same day as one of my RE appointments, a special little boy named Leon was born.  While we getting ready for the transfer we also got a call from our lawyer that there was a 16 year old expectant mother that was due the beginning of March was looking to place her  baby for adoption and he was wondering if we wanted our profile shown we said yes. Even though we were weeks from doing our embryo transfer we thought we would try for both. So on January 29th we went to Seattle for our embryo transfer.  We found out that the embryo never made it through the freezing process and when it thawed it was no longer viable. 
 
The next day we got a call from our lawyer and found out the expectant mother that was due in March and picked a family with another agency. Then a few weeks later we found out that our home study was only good for a year and was 2 months from expiring. So Dada and I had some thinking to do of what we wanted to about our home study.
 
            On March 9th, our social worker who had been working with us for 2 years now and knew us well called me. She told me she had a friend with an adoption agency in Missouri and her friend was looking to share couples profiles to some birth parents of a 2 month old.  Leon, that little baby was you. She also asked if we want the agency info to e-mail our profile. We thought since the agency was willing to show our profile without signing with them beforehand we had nothing to lose. Our profile was shown the next day on Tuesday the 10th and Wednesday the 11th we get a call from the agency saying that the birth parents liked our profile and want to meet us and only us. Our social worker asked how fast we could get to Missouri from Washington State. As soon as I got off the phone I called Dada's School. We met at the agency the next day, then they put you in the car we had rented and we followed them to the mall. The four of us hung out at the mall with you for 4 hours. Your biological mom and I even picked out an outfit for you.
            Later that night your birth parents called us up and we went out to dinner and a movie while you stayed with your grandmother.. It was good night but I was tired and had trouble staying awake during the move. Dada and I wanted to give your birth family one last full day with you before you came to be with us. That Sunday night we texted Liz at the adoption agency and she text your birth parents to see if we were still on for the next day to sign parental right termination papers. On Monday, March 16th, we get a text from your birth mom 25 minutes from signing saying that your birth dad could not sign and want to find a way to still parent. Our hearts were breaking at the news. We had already fallen in love with you so much. But not only were are hearts breaking for us, we were also sad  for you because we know with all our hearts that we could give you a better life than what you your birth parents could give you. I was not mad at them; we could not be because we know that having to place a child up for adoption has to be one of life's most difficult decisions.
 
Hours after being told that your birth parents would not sign the papers, your birth mom called and told us they were on their way to the lawyer office and asked if we could come back and get you.
We showed up at the adoption agency before your parents came with you. They had to meet with their lawyer and had schedule to meet with the agency afterward. We waited for them to be done with their meeting and signed papers with our lawyer while we waited because the lawyer shared an office with the adoption agency. That night your birth parents came to our hotel and brought your clothes and some other things to take home with us.  
            The next morning you had your 2 month checkup at your pediatrician in Missouri and your birth mom met us there. The appointment was made way before adoption plan was in place.  Then on Wednesday the 18 of March we went to court to be able to become your legal guardians. The gal at the agency thought that since our FBI finger prints were over a year old we needed to redo them so we could get clearance to move you out of Missouri. So Dada and I went to a place that we could do it electronically and have results and clearance within hours. We got Dada's prints back right way. However, mine where a different story as they had been throughout this whole adoption process: my prints came back unreadable. So we had to do them again and do them a third time too. Because we knew that they would be a problem, we keep calling the company to see if we needed to do them again. We did the prints three times and all three came back and the company even ran them a fourth time and they still came back unreadable.  So we went to  the State portal office and they told us all they could do was try to get me in to do a background check by using my name but that it would take 8 weeks. We were told that we could not leave the state with you until we could get my FBI background check to go through. Missouri said that they were ok with the fact my background check was 13 month old but they are afraid that Washington was not going to be ok with it. Not knowing what else to do, we e-mailed our lawyer in Washington to see if he could be of any help. He told us that Washington had a rule that the finger prints need to no more than 18 month old so we were good. Because of my fighting with my finger prints, we stayed in your birth city until Friday the 20th . That night we drove to St. Louis thinking that we would just return the rental car and stay in a hotel in St. Louis until we were told we could take you out of Missouri. However, it turned out that I had some friends from back in college who live in St. Louis and saw on Facebook that we were in Missouri, so they offered to let us stay with them, so we kept the car and stayed at their place so we did not have to pay for a hotel.
            Then on Friday March 27th we go the call that we had clearance to leave the state with you. However, we had a hiccup: the Missouri Child Division had been called when you where one month old. We did not know what it was about, just that there was a concern about you.  After you had been placed with us, they went back to the house to check up on you without knowing that you had been place with us and that we had court papers for you. So we had to drive you back to your birth city so they could see you in person and see your court papers. After we cleared stuff up with Child Division, we took you to Cincinnati, Ohio to meet Cousin Drew and Aunt Megan. We stayed at Drew’s Nana's house and you used Drew’s crib at her house. Because of the extra four hour drive back to your birth city, we did not get to Cincinnati until one am Cincinnati time. We end up staying and hang out with Uncle David, Aunt Megan, Cousin Drew and Drew’s nana until Thursday March 31st because that when the cost of airplane tickets had gone down. You cried the whole flight home to Seattle. That was the only time you have ever thrown such a fit. We end up getting into Seattle really late the night of the 31st. Aunt Tracy picked us up from the airport in our car and we took her home. We were going to drive straight home that night but the pass was closed and no one we know had a crib for you to sleep in so we had to get a hotel that night. The next morning when we woke up the pass was open so we were able to get on the road and take you home to our house. So Mr. Leon, of all days to bring you home, we got you home and April 1st : April Fool’s day.
We had to wait 6 month to be able to finalize your adoption. We had to meet with our social worker for three post placement visits. She wrote report for the courts in Missouri to see and knew that you were doing great in our house. In that first six months, we had Meet and Greet parties for people to meet you and everyone one fall in love with you.  We face time a few time with your birth parents and you and  Momma even got to fly to South Carolina so you could meet your 5 cousins and your Aunt Karie and Uncle Steve in August. You fell in love with their cat Dixi.  After we got back from South Carolina, our lawyer in Missouri called and told me that Dada and I needed to sign papers and get them notarize so we could finalized your adoption out of court. We chose to finalize out of court so that we could stay in Washington. The judge had to wait for you to be in our house for 6 month before he could sign off on your finalization. On September 18th, 2015 while you were napping in your crib, Dada was at work teaching high school and the daycare kids where in the house happily playing, Momma got a e-mail form our lawyer that your adoption was finalized and that you legally had our last name.  
            Leon, Dad and I love you with all our hearts and we are so lucky that you are our son and that you are forever ours.
 
Love
Momma 
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Darla's Story: Our World Turned Up-Side-Down (Czech Republic)

A shrug of the shoulders is all it took to turn our world upside down.

My husband and I sat in our RE’s office, in those plush leather chairs that are supposed to make you feel comfortable, waiting for hope. After four failed IUIs, our IVF egg retrieval had given us nothing to transfer. Nothing grew after the initial fertilization. We were devastated and needed answers. I was 29 years, he was 31. We were young and healthy. This shouldn’t be happening.

Our doctor looked at us from across his desk. And shrugged his shoulders.

He had no clue why our treatments hadn’t worked. Said he would recommend trying again if money wasn’t an issue. It was probably a fluke, especially at my age. But he knew money was an issue, so his next best move was to use donor eggs.

My mind reeled, of course. Donor eggs? That means any babies we had wouldn’t be genetically mine. Could I handle that? Would I resent my husband for the genetic link he would get to have? Would I think of myself as not being their real mom? We needed time to think.

We considered a few options. Maybe we could try IVF again. It wouldn’t quite ruin us financially, and it might work. Maybe we could be childless; we could travel the world, live the good life. But I nearly died inside just thinking about it. Embryo adoption presented itself as a very viable option, but the more my husband thought about it, the more he wanted to just give it one shot with genetic material from at least one of us – if that didn’t work, we’d move on to embryos.

An egg donor really was our best option. So we researched until we couldn’t research anymore. We met with financial people at our clinic. We had phone consults with three other clinics. Every discussion pointed to the same glaring fact: if we couldn’t afford to do IVF again with my eggs, we sure as hell couldn’t afford a donor egg cycle, not at nearly twice as much as a regular IVF cycle. We felt so defeated.

But then, I remembered something I’d seen briefly mentioned on the support forum I’m on (thencomesfamily.com). A woman had traveled to the Czech Republic for a donor egg IVF cycle. I remember mentioning it to my husband once, toward the beginning of our treatment, and both of us laughing off the idea. But just maybe…

On a whim, I contacted a few clinics in the Czech Republic to get some information – cost, protocol, stats, anything they could give me. And the responses came in. The stats were on par with, and sometimes better than, stats of clinics here in the US. Protocol was similar and monitoring could be done stateside. And the cost? Well that was the kicker. The price tag for a cycle was a fifth what it was here! This was a very real option. And after a lot of soul searching, comparing of clinics, talking with my therapist, and crunching the numbers, we decided to go for it.

In January of 2016, we flew from our home in Austin all the way to Rome, Italy to begin our once-in-a-lifetime trip. When in Rome, right? We made the trip about more than conceiving a child. We spent time in Florence, Vienna, and Prague. We made memories that will last us a lifetime.

And on February 4, 2016, we also made the embryos that would become our babies. On February 9, we transferred two perfect little blastocysts, and those little blasts became our two little girls, due in October.

Even though we’re now finally expecting our little miracles, my husband and I remember all too well the pain and desperation we felt pretty much constantly last year. All we want to do now is shout it from the mountaintops that this option exists, it’s easier than it seems, and isn’t crazy at all!

We’re grateful every single day that this option exists. We’re grateful to a clinic that confidently took us in and did what no one else had been able to do. We’re grateful for that shrug of the shoulders from our RE that sent us on such a wild ride. And while there are times that we still mourn the loss of a child with my eyes or nose, we know that these babies are ours, and we already love them more fiercely than either of us ever could have imagined.

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Lindsay's Story: Fertility, One of Those Things We Take For Granted

Tablet and Stethoscope Infertility

Tablet and Stethoscope InfertilityI feel like fertility is one of those things we all take for granted. We just assume that when we are ready for children that we’ll go off birth control and get pregnant quickly. Unfortunately, our story was a bit more complicated than that.

My husband Travis and I were married in June 2010. We decided to spend a year renovating our house and just enjoying being married before we added children to the mix. I went off birth control in August of 2011 and we started trying to get pregnant.

At first it was fun. I charted my basal body temp, we had lots of sex, and every month I would eagerly await a positive pregnancy test. Months went by and nothing happened. It was around month 9 that I started to worry that there was something wrong. I knew it could take a healthy couple under 35 up to a year to get pregnant, so we pushed forward and continued to try on our own for a few more months.

In August of 2012 I visited my OB/GYN for my annual exam and to ask about starting infertility testing. He ordered some blood work and scheduled me for an HSG to check to make sure my tubes were still open. He also gave my husband a script for a semen analysis. All of our testing looked perfect, except my mid luteal phase progesterone levels were a little low. We also found out that we are completely out of pocket for infertility testing and treatment. My doctor assured me that we could easily get pregnant with clomid and IUI (intrauterine insemination). I did one cycle of clomid and IUI with my OB. Despite having a good looking follicle, the cycle failed.

After that cycle I decided to look for a Reproductive Endocrinologist. My OB prescribed unmonitored clomid, which I wasn’t comfortable with. I wanted a doctor that specialized in treating infertility. We had consults with 2 different REs and decided to move forward with additional testing and treatment with the second one. In January of 2013 we resumed testing and found out that in addition to my low progesterone, I also had hostile cervical mucus and was a carrier for cystic fibrosis. Luckily Travis wasn’t a carrier for CF and IUI would help us get around the issues I had with my cervical mucus. Over the next few months we did 3 additional IUIs. The first was unmedicated and the next two were clomid (monitored) + hcg trigger + IUI cycles. All of these cycles failed as well.

In June of 2013 we had our IVF consult with the RE. The thought of moving on to IVF was both scary and exciting at the same time. We were given about a 15% chance of success for IUI, but IVF would give us a 50% chance. The tradeoff of course is price. While an IUI cycle costs $1000-$3000, the average cost of an IVF cycle is $15,000 including meds. We decided to refinance our house and use our equity to pay for our IVF cycle. While it was a large amount of money, we knew our baby would be worth every penny.

In August of 2013 we started our first IVF cycle. I think the scariest part of the cycle was the unknown. I would be giving myself multiple shots a day to force multiple follicles to grow and then go under anesthesia to have my eggs retrieved. The embryologist would inject one of Travis’s sperm into each mature eggs, hopefully fertilizing them. We would then wait to see how many fertilized and how many would grow to blastocyst, a ball of a few thousand cells that would hatch and hopefully implant into my uterine lining. Our cycle started off uneventful. I gave myself  

 

injections and went in for ultrasound monitoring, where we saw several follicles growing on my ovaries. After about a week of stimulation meds, we used an hcg trigger to finish maturing the eggs and I went in for my retrieval 2 days later. This is where our cycle took a turn for the worse. We only retrieved 6 eggs and only 5 were mature. They were able to fertilize 3 of them. I tried not to panic and prayed that 1 or 2 of my 3 embryos would make it. When we got our report on day 3 after retrieval, we found out all three were slow growing and poor quality. None of the 3 made it to blastocyst and we had to cancel our transfer. I think this might be one of the hardest things I have ever went through. I took all of the medications, went through the egg retrieval and still never had a chance at success.

We met with our doctor who said our terrible cycle was likely just a fluke, so we made plans to start our second round of IVF in October 2013. I would be on higher doses of stimulation meds to hopefully help my ovaries produce more eggs. I also did some immune testing and found out I had borderline high Natural Killer cells, which could attack an embryo. I would receive an infusion of intralipids to help treat the high natural killer cells. Our 2nd round of IVF went smoothly. They were able to retrieve 8 eggs and 7 were mature and 5 fertilized. On day 3 after retrieval, we had 2 or 3 embryos that were good-fair quality and the others were slow growing and poor quality. We anxiously awaited our blastocyst transfer on day 5. We found out on day 5 that we had one grade 1 (highest grade) early blast to transfer. This was a huge relief, I was so worried that we would end up with nothing to transfer again. Unfortunately they were unable to freeze any of our remaining embryos. After transfer I had to wait 8 days to have a blood test to find out if the transfer worked, of course I cheated and tested with a home test a few days early. To my surprise our lonely little blast had implanted and my home test was positive. My husband and I were on cloud nine. However, our happiness was short lived. My first beta hcg (blood test to measure pregnancy hormone) came back at 14.6, typically it would be 40-50 at that point. Since I had been getting positive tests for a few days, I knew this was likely not good. A second blood test a few days later confirmed my fears; my hcg had dropped to below 5 officially making this a chemical pregnancy (an early miscarriage before a pregnancy can be seen on an ultrasound).

Dealing with the chemical pregnancy was hard for me. This was the first time I ever saw a positive pregnancy test. It was hard for me deal with being so close to success and then having it ripped away. Looking back, I am pretty sure I dealt with undiagnosed depression and I wish I had sought the help of a professional to deal with my loss.

My doctor seemed torn with his recommendation on how we should proceed with treatment. At first he told us that we should start looking at other options (donor egg, donor sperm, embryo donation, or adoption). This was hard for me to deal with, as I really felt like we hadn’t given IVF a fair chance yet. He ended up talking with another RE and they came up with a plan for IVF #3. I would do much higher doses of meds and plan on genetic testing for the embryos we create. This would tell us if we had an embryo quality issue (at least from a chromosome standpoint). We decided on January 2014 for this IVF cycle. Things went well, we had 8 eggs retrieved and all were mature and fertilized. Unfortunately, most were again slow growing and poor quality by day 3. We were lucky to have 2 embryos make it to blast this cycle, we transferred 1 expanded

 

grade 1 and 1 grade 2 early blast. Despite transferring two embryos, the cycle failed.

After a 3rd failed IVF cycle, we decided to change courses with our treatment. We had our choices between donor eggs or donor embryos and Travis chose to try donor embryos. I consulted with an out of state clinic in late February (our local clinic doesn’t have a donor embryo program) and we had our embryos chosen and our transfer scheduled for early May. The clinic’s program was anonymous and had chosen a profile with 9 embryos (6 were frozen on day 2 and 3 were blastocysts). Our plan was to thaw the day 2 embryos and grow them to blastocyst. Hopefully we would have enough to transfer and we would be able to save our already frozen blasts to use in a later cycle, ideally for a sibling. When we got to our appointment the day of the transfer, the doctor had bad news. Out of our 6 embryos, 5 survived thawing, but only one had grown much and it was a morula (stage before blastocyst). We decided to thaw our blasts as well. Two out of the three blasts survived the thaw and we transferred both along with the morula. This clinic required waiting 12 days before having hcg blood work drawn. I impatiently tested at home every day starting at five days after our transfer. This cycle failed as well.

We decided that before we would try another cycle, we wanted to look further into immune testing. My local clinic did some basic testing for us, but we decided we wanted a full work up. I filled out paperwork and sent in my medical records to make a consult with a Reproductive Immunologist outside of Chicago. I wanted to know if there was more to my immune issues before we transferred any other embryos. We decided that if she were to find more issues, we would give IVF with my eggs one more shot, this time adding immune meds to my protocol. We also decided that we wanted to switch doctors. My RE was great, but I felt like he had already given up on me as a patient. We decided to switch to the RE who was the medical director at the clinic where my RE did his IVF cycle. I had seen her for cycle monitoring several times and she seemed much more open to new ideas and willing to work outside the box.

It takes several months to get in to see the RI in Chicago, so I used the summer to work on losing a little weight and trying to get healthier. One thing that they don’t tell you when you are starting fertility treatments is that it can take a major toll on your body. All of the extra hormones, steroids, and the stress cause many women to gain weight. My 135lb 5’3’’ body ballooned to 165lbs. I was able to drop about 20 of the pounds before my appointment with the RI in August.  

I feel like seeing the RI was a good choice for me, even though much of the infertility community isn’t on board with immune treatments yet. I was diagnosed with several more immune issues, a few clotting issues, and found out that the blood flow to my uterus is poor. The RI prescribed her own protocol to be added to my IVF protocol. The immune protocol included prednisone, IVIG infusions, lovenox, and baby aspirin.

Since we found out my immune issues were more significant than we first thought, we decided to try IVF one more time. In November 2014 I started IVF #4. Again the cycle started smoothly, we were able to retrieve 10 mature eggs, which is the most I have ever produced in an IVF cycle. Of the 10 eggs 7 fertilized normally. Unfortunately by day 3 I only had one embryo that was good  

 

quality and growing at a normal pace, the rest were either very slow growing or poor quality. I also found out before our retrieval that my lining was just too thin for transfer and we would have to do a freeze all cycle. I was really worried that we wouldn’t have any embryos make it to blastocyst and we would have nothing to freeze. I knew from the moment I got my day 3 report that I was done cycling with my eggs. I was tired of the rollercoaster of emotions that went with IVF and only getting a few (if any) embryos to transfer. By some miracle, we ended up freezing 2 grade 2 blastocysts on day 6.

We decided to do a FET (Frozen Embryo Transfer) in January 2015. Unfortunately we had to cancel the transfer because despite increasing my estrogen and taking several additional medications, my lining wouldn’t thicken to my clinic’s minimum level for transfer. We would have to try again another month. Our second attempt at a FET was in April 2015. Luckily this cycle my lining cooperated with the increase in estrogen and addition meds and we were able to transfer our 2 frozen embryos. Unfortunately the cycle failed.

While we waiting to do our second FET attempt in April, I was contacted by a woman looking to donate her remaining 7 blastocysts. After our terrible day 3 report from IVF #4 in November, I had posted in an Embryo Adoption/Donation group that I was looking for embryos since we were unable to make viable embryos using IVF with my own eggs. I was honest with the potential donor that we had 2 frozen embryos we still needed to transfer and that my transfer was still a few weeks away. She offered to wait to find out the results of my cycle before trying to find another donor. Of course our FET failed, so we decided to move forward with the private donation of her 7 blastocysts. All of her blastocysts were high quality and the timing was perfect. It was really hard to believe because it almost seemed too good to be true.

Some people are afraid to attempt a private match with embryo donation because they think the process is too daunting. Really the process was quite simple. Once we agreed on the match and worked out any details (mostly what happens to the embryos if we divorce or if one of us dies, what level of communication is expected between recipients and donors, what sort of fees would be reimbursed, and any other items important to the donor or recipient), I had a lawyer draw up the contract, which is a simple transfer of property. The donors had a lawyer review the contract to make sure everything was ok on their end. Then it is a matter of both of us signing and notarizing the contract to make it legally binding. Once the contract is notarized, I arranged shipping of the embryos and they were shipped along with the infectious disease blood work results from the donating couple. We took a few weeks to get to know each other, but once we started working on the contract, it only took a few weeks to finalize and get it signed and notarized. The embryos were officially ours and shipped to my clinic by the beginning of June 2015.

Our first FET cycle with our snowflakes (a nickname given to donated/adopted embryos) was August of 2015. I still struggled to get my lining thick enough, but it did make it above the minimum and we were ready to move ahead with the transfer. We decided to transfer 2 of the 7 embryos. When we arrived for the transfer we found out that our clinic thawed a straw of two embryos, but only 1 survived. They thawed a straw with a single embryo so that we would have  

 

2 to transfer. Since the blasts weren’t fully expanded, they couldn’t be graded (generally under the new grading system my clinic started using, blasts are given a letter grade for the inner cell mass and a letter grade for the trophectoderm. The inner cell mass is the part that will become the baby and the trophectorderm is the part that will make up the placenta. The best score is A and the lowest is C). We were very happy to have two blasts to transfer and had new hope that our cycle might actually work. Unfortunately, neither embryo implanted, resulting in another failed cycle.

After this most recent failed cycle, I met with my RE to discuss a change in protocol I wanted to try. Some women have a much easier time building a lining using either a natural cycle or a low stim cycle. She agreed that I could try a low stim cycle to see how I respond. I decided before we would transfer any of our 4 remaining embryos, I wanted to do a mock cycle to test the new protocol. We did the mock cycle in late September/early October of 2015. My lining looked perfect so we decided to move ahead with a FET cycle in November using this protocol.

In November 2015 we started our second FET with our donated embryos. In addition to the new stimulation protocol, I also had a much more aggressive immune protocol since we had also been struggling to keep my immune levels in the normal range during my FET cycles. I ended up on 30mg of prednisone and did 2 IVIG infusions before my transfer. We had to make a decision on what to do about the number of embryos to transfer. We had 4 remaining, but they were frozen 2 to a straw. If we decided to transfer 2 and we lost an embryo in the first straw, we might have to refreeze one of the embryos from the second straw because my clinic will only transfer up to two blastocysts. We ultimately decided to thaw one straw and transfer either one or two blastocysts depending on what survived the thawing process. We would only thaw the second straw if neither embryo from the first straw survived. This turned out to be the perfect plan for us. We did lose one of the embryos in the thaw, but the second embryo was a perfect fully hatched AA blastocyst. With a blastocyst of that quality, the success rate is often high enough that transferring a second embryo doesn’t increase your odds of success. Even my RE said she was happy to see our instructions for thawing once she saw the quality of the blast that survived.

After transferring our perfect blastocyst, we had the long 8 day wait for our beta hcg blood work (blood pregnancy test). Early in our infertility journey, I would get impatient and take home tests really early. After seeing so many negative tests, the appeal of testing early wasn’t there. I did decide to test the morning of our beta and much to my surprise my test was positive. My nurse called later in the afternoon to tell me that my first beta looked perfect at 39.6. My clinic continued to monitor my betas and provide me with weekly ultrasounds to monitor the baby’s growth, until I was released to my OB around 12 weeks.

I am currently almost 25 weeks pregnant with what I can only describe as our miracle baby girl. I still sometimes can’t believe after 3.5 years of infertility treatments that I am pregnant. My pregnancy hasn’t been perfect and I have had a few complications including a subchorionic hematoma that bled for about 7 weeks, being diagnosed with pregnancy induced hypertension, and being diagnosed with pregnancy induced hypothyroidism. The big issue we are fighting now  

 

is intrauterine growth restriction (IUGR), likely caused by poor blood flow to her umbilical artery. Baby girl is currently only measuring at the 7th percentile. My doctors (OB, RI, and now a MFM) have come up with some med changes that will hopefully keep her inside and growing for several more weeks. Even with the complications, I am so grateful to have the opportunity to experience pregnancy.

I think one surprising fact to most fertile people is that being pregnant doesn’t “cure” infertility, it only cures childlessness. I am and always will be infertile; it is part of who I am. This doesn’t always have to be a negative trait though. Infertility has made me a more empathetic person. I know what it is like to have pain that you hide from most of the world because they don’t understand it. Even if I don’t fully understand your struggles, I understand what it is like to struggle and because of this I am not as quick to judge. Infertility has also introduced me to a wonderful network of women, many of whom I consider close friends. While many of them have found success through either treatments or adoption, some are still fighting the infertility battle. For my friend and anyone else still pursuing treatments or adoption, I am rooting for you. For the women who decide to stop treatments and pursue a childfree life, my heart aches for you and I wish you peace as you walk your new path.

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Alexis' Story: Ectopic Pregnancy and Cardiac Arrest

I was married just 8 months when I found out I was 10 weeks along with an ectopic pregnancy. The embryo still had a heartbeat in my left tube. The surgeon got it out but 2 weeks later, I went into shock and cardiac arrest. What happened is the surgeon didn't get the entire embryo out and my tube never perforated. I had no pulse. No heartbeat. Was found unconscious in my house, alone. I can say I know what it feels like to die. It haunts everyday of my life. Once rushed to ER, they said I had 2 liters of blood in my abdomen from tube not perforating. I needed 2 blood and a plasma transfusion. I had to have my left tube removed and the right one was destroyed from the severe trauma from all the blood in my abdomen.

What should've been a simple ectopic pregnancy, left me not only infertile with no tubes but threw me into AMA with DOR.

My first fresh round of IVF did not work but 5 months later, my FET gave me my miracle baby.

Now, another fresh and frozen round cancelled years later, due to unknown fluid in my uterus and then the embryos arrested once my uterus was finally ready for the transfer.

We are one and done not by choice. I'm hoping therapy will heal time. I yearn for another baby everyday that I'll never get to have.

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NIAW 2016, Liz' Story: Snowflake Babies

The ghost of a red-haired child (From a blog post Jan 2013)

 
Long before we knew we would deal with infertility, my Mom would frequently talk about what she thought our children would look like. She always guessed we'd have a child with red hair because of my fair complexion, the freckles I had as a child, and my husband's strawberry-blonde hair. My mom's sister had red hair, but no one else in our family did, so I was skeptical. But it always stuck in the back of my mind.

One day while I was waiting to catch a flight at the airport, I saw a young husband and wife who each looked uncannily like me and my husband. The wife was holding their baby on her lap but from where I was sitting, I couldn't get a good look at him/her. I thought to myself  "Here is a good test to see what our child will look like!" I got up to casually walk by and check and sure enough this beautiful little newborn had red hair.

After that, I figured our babies would have firey-red hair. This was always the visual picture I had painted in my mind of our child from that point forward. But as we moved along through the painful infertility process, that visual picture became blurrier and blurrier. Until finally I had to completely emotionally bury our red-haired little child. That red-haired child is now just a ghost.

An interesting realization occurred for me when I got the call last week announcing that we had a 10k IVF insurance benefit available to us.  As soon as she said "IVF benefit" my immediate thought was "This means I would have to attempt IVF again."

And my stomach dropped. I felt sick. I didn't want to go through IVF again! NO! And it wasn't because of the rollercoaster of emotions involved, it wasn't because my eggs suck and it probably wouldn't work anyway, or the doctor's appointments, or the injections.

I realized it was because that would mean I'd have to bring that grieved child back from the dead - the child I had already buried and mourned. It felt wrong, it felt off. But more importantly, our children are already here.

Our children are frozen in a tank in San Antonio. They have big smiles and beautiful eyes.  I love them more than anything.

And one of the most remarkable things about these babies is that they came with an incredible relationship with our donor and her family. This is a blessing I can't even put into words. Our children will have another family that will love them too. I wouldn't trade that for the world.

Of course we certainly aren't out of the woods yet, and won't feel that way until we have our baby(ies) in our arms. But I feel like we are finally being shown the reason as to why we had to endure the devastating sadness, despair and pain. It makes sense why we had to travel the dark path we've been on that led us to these babies.

This is so much better.

 
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NIAW 2016, Julie's Story: Fragile X Syndrome

Hello, My name is Julie Thomas and my husband is Steve. We went through Embryo Donation or ED to get our daughter. Here is our story:

We meet in High school (awe, I know), and eventually married in 2007 after 6.5 years of dating! We always knew we would have to go through IVF to have children. I carry a genetic disorder called Fragile X syndrome, which causes developmental delays, is passed on the X chromosome. I knew I was a carrier since around age 10. I have 2 brothers that are affected by fragile X and a sister that is not a carrier nor has it. I was told I had a 50%pass rate to our future children and I also had over 1,000 repeats of the gene CGC. That is a huge number!

With that said, we went through IVF in 2013. We had to use a special process to test our embryos for fragile X called PGD or Preimplantation genetic diagnosis. After our 11 embryos that were biopsied and sent off to the lab for the pgd testing they all stopped growing. We are not sure why, no one could give us an explanation. So, after a few months off, we jumped back on the horse, so to speak to plan B. My sister graciously offered to be our egg donor, but that was just going to be more expensive than we thought, on to plan C embryo donation program through our clinic.

Embryo Donation is when a couple that has gone through IVF and has embryos leftover, instead of destroying them, they donate them. Most ED programs through clinics are anonymous, so we will never know our daughters donors. We had to go through a process to get approved to go through the program, this took a few months. After about 6 months on the waitlist we received the call we had been waiting for, we were at the top! We received 4 profiles to choose from with varying amount of embryos. Both me and my husband knew what set we wanted after each of us had read my daughters donors profile. She was 1 of a set of 3, 2 grade A, 1 grade B. We started our cycle and transferred in July 2014. Our daughter was the only embryo to make it to blast stage to transfer and she snuggled in for 9 months!

Now for most of my pregnancy everything was normal, morning sickness, growing pains. Then around 22 weeks we had our anatomy scan and found out something was wrong. We saw a fetal medicine specialist that told us the baby was 3 weeks behind in development behind me! They said she was a IUGR baby or inneruterine growth restriction, which means her cord only had 2 vessels not 3. We then started weekly monitoring and Ultrasounds. She just kept chugging along, slow but sure. By 38 weeks, our doctors said we needed to get her out due to the placenta stopping to provide for her, so I was induced. She was a rock star through the whole process, which took 3 LONG days! She finally arrived and was 3lbs 15.1oz 16 inches long, with a full set of lungs I may add! She was in the NICU for about a week and a half before she came home. They just needed to get her bigger. Fast forward a year and she is now 1 and over 16lbs! She is right on track development wise, still working on those darn growth charts, but she is growing at her own pace.

I hope after reading this it gives you hope if you are still in the trenches of starting a family. If you are a donor, who has given your embryos a chance at life, thank you from the bottom of my heart. I will never know her donors, but I thank them everyday for our daughter, Lucy. If you have any questions please feel free to ask, we are very open about our journey and hope to give others hope.

 
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