Brian and Mandy’s story: still waiting for the 2nd line… (Male Factor Infertility)

My husband Brian and I met when I was a fresh-faced college sophomore and he was a young professional. It was love at first sight.

We talked a lot about our future family: 1 boy and 1 girl, perhaps a few more. We picked out names and talked about our timeline. I wanted to be a young mom. When I was 21 years old we decided it was time to begin our family. I was just about to finish my masters’ degree, and Brian was secure in his job; everything was falling into place.

We began trying to conceive the “old fashioned way” in the fall. Naive as I was, I decided to buy Christmas gifts for all the grandparents, from their future grandchild. I was so certain that we would be pregnant before Christmas--and what a great way to tell our parents we were expecting!!

December 2003: No bun in the oven
Three months and NO BABY!! What?!?!? Thank goodness Brian had convinced me to keep the grandparent gifts, just in case.

I distinctly remember the arrival of great Ant Flo each month—and couldn’t help but start to feel there was something wrong. The tears of frustration we cried every month were unbearable; if we only knew the journey was just beginning.

February 2004: Just deposit your sample in this cup, sir...
On a routine doctor visit for Brian, I casually mentioned to our primary care physician that we had been trying to conceive for nearly a year. After saying that we're young and it will probably happen soon, the Dr. decided to order a semen analysis, just to be on the safe side. He explained that the tests for female infertility are much more extensive, so it would be wise to get the male tests over with.

We went home with our very own brown paper bag and sterile plastic cup--how exciting!

The next day, we received a call from the nurse. While this was over three years ago, I remember it like yesterday. We were walking into the Home Depot (of course), when Brian's cell phone rang. He said, "it's the clinic". A few years later, those simple words would be enough to send me into a complete panic attack. At this point, however, it was just another routine visit--we weren't expecting anything dramatic.

As I watched Brian's face crumple up in confusion, I knew something was wrong. Little did I know what was going on on the other end of the phone. The nurse asked him: "Did you have a vasectomy?". Brian replied, "no...". "Well, your semen analysis showed zero sperm".

At that point, all that registered was shock and confusion. It had to be some sort of mistake! Brian has never had a sick day in his life...this wasn't supposed to happen to us!

February 2004-February 2005: We have no idea what's wrong with you...

The next year consisted of visit upon visit to our local urologist (who is absolutely amazing, by the way), more semen analyses, prostate exams, cat scans, blood draws, and other humiliating experiences for my dear husband.

When our local doctor decided it was beyond his level of expertise, he sent us to the Mayo Clinic. We thought: well, if they can't figure it out there, this is a true medical mystery! Apparently Brian is quite the man, because he left even the Mayo physician baffled.

After a few months break, we received a referral from our urologist to another well-known clinic. This time, the doctor took the time to really explore what might be happening. Because of Brian's Jewish background, he decided it would be wise to order genetic testing for the cystic fibrosis gene...BINGO! All because of a little recessive gene in Brian's system, he does not have full vas defrens (the tubes that run from the testicles to the end of the penis). In other words, he has sperm, they just can't get out!!

The doctor told us our only chance of having biological children would be to do In Vitro Fertilization (IVF) with ICSI (intracytoplasmic sperm injection). Unfortunately, we couldn’t afford it at the time.

Reluctantly, we took a break...

August 2006: IVF #1
After scrounging for money, selling all of our valuable posessions, and taking out a loan from our local bank--we had enough money to do a round of IVF. Unfortunately, our insurance doesn't cover IVF/ICSI or the medications associated with it. We happen to have a very good health insurance plan with great benefits…but infertility treatments are not included. This came out to be approximately $15,000 out of pocket. We're not poor, but who can afford that?!?

Brian had to have sperm surgically removed from his testicles (not a very nice procedure), and I had to endure weeks of shots and pills...that tended to make me bloated, emotional, and crabby. My belly and butt looked like a pin cushion--black and blue--for weeks! It was all worth it, though--for the chance to have a family of our own.

The doctors retrieved 15 eggs, 12 of which fertilized, 9 fertilized normally. After three days of incubation, the embryos (our babies!!) were ready to go back in. Because of my young age and no apparent reproductive problems, we decided to only transfer 2 embryos. We were both so happy that day--we had every reason to believe that this was the start of the family we had always wanted.

The next two weeks were emotional: waiting, hoping, wondering. We got a picture of our beautiful little embryos. I put them in a frame I had bought for the nursery.

I kissed them goodnight before bed, and talked to them throughout the day. I remember rubbing my belly and whispering: "please hang on little guys or girls...your mommy and daddy want so badly to meet you".

During this time, Brian and I had done a few home pregnancy tests. They all came up negative.

The morning of the blood draw, we were still cautiously optimistic. We're good people...we love each other, we do good things--how could we NOT get pregnant?

Early in the afternoon, we received a call from our doctor. Brian put the phone on speaker so we could both listen. It's amazing how so many hopes and dreams can be lost in a moment. She told us that the pregnancy test had come back negative.

I can't even begin to explain the emotions I felt at that time...anger, confusion, sadness, helplessness. I felt like I had let Brian down, I had let our beautiful little embryos down. We cried and held each other for hours. I've never felt so sad, yet so close to someone at the same time.

We couldn't face another cycle right away (emotionally or financially), so we reluctantly packed up our drugs, tried to forget about babies, pills, pregnancy...and attempted to get back to our old life.

Late January 2007: IVF #2
After 5 months, many conversations, and a trip to the adoption agency...we decided to put absolutely every last cent (and then some) into one last try at IVF. Fortunately, we had 4 frozen embryos--so the process would be (a little) less expensive.

The shots and exams went much easier the second time around; we knew what to expect. At times we felt like quite the pros! Our doctors were incredibly optimistic...they assured us that the last time was just plain bad luck.

Throughout the 2nd cycle we kept a video diary. We talked to our embryos...we told them how much they meant to us, and how we couldn't wait to welcome them into the world in 9 months.

We went into the second transfer with completely open hearts--we weren't going to let the tragedy of the 1st cycle affect the 2nd. Everything went very well, we transferred 2 embryos (2 didn't survive the thaw). Again, the next two weeks were a living hell.

I went into the blood draw thinking it was just a formality...I felt pregnant! I knew this was the time!! Unlike the first time with my nerves and hesitation, this time I was absolutely sure we would get a good result.

I had planned to turn the camcorder on in order to catch the results; but the doctor called much earlier than expected. It HAD to be good news!! Again, Brian put the phone on speaker. I could tell from the moment I heard her voice that we had struck out yet again. All I remember hearing was "I'm so sorry guys...". I stumbled out of the room and collapsed into a sobbing mess on the floor. I couldn't think clearly. I remember hearing these awful moans and wondering where they were coming from--until I realized they were coming from me.

Those next few days were some of the worst of my life. Infertility forces you to mourn a child (or children), that you've never had a chance to meet. I was attached to those embryos in so many ways. I had so many hopes for them. That negative test was, to me, like going through the death of a child. Except you don't have the support: the sympathetic family and friends, a funeral, a grieving process. All you have are your ruined dreams and a lot of tears.

I am so thankful I have such a wonderful husband. There is absolutely no way I could have gotten through those first few weeks without him. Just knowing he was there, knew what I was feeling, and willing to talk meant so much to me.

March 2007: A ray of hope

A few weeks after our negative test, we went to the Family Building Conferece, put on by the Midwest Region of RESOLVE http://www.resolve.org/ . We went to the conference hoping to win one of the IVF cycles they were giving away. We didn't win; but we came back with so much hope!

We met a urologist who said he may be able to surgically correct Brian's condition! To us, the ability to be able to conceive naturally would be worth a million IVF cycles!

July 2007: Surgery

After the initial consultations, the big surgery day came quick. We told ourselves we were prepared for whatever outcome. If it works, we would start IUI with Brians sperm. If it doesn't, we would do the same with donor sperm (DS).

After 7 LONG hours in the operating room, the surgeon came to talk to me. He said he did everything he could, there were just too many blockages and missing links. It was completely unreconstructable. I told myself I wouldn't cry. We knew our odds weren't great. I couldn't help it: this was truly the absolute last opportunity we had to have biological children. It was a dream I was not prepared to let go--it had to be ripped from me.

Brian's recovery was long and painful. The healing process didn't give me a lot of time to think, thank goodness--or I would have been even more of a wreck.

Late July 2007: Break out the sperm catalog

I'm not sure who brought it up first, but we started discussing donor sperm (DS) again. While it was painful to have to move in that direction, we both agreed we didn't want to wait any longer to start our family.

Selecting a sperm donor is something I never thought I could do: how do you replace your husband? In my eyes, no one will ever compare to the amazing man I married.

Throughout this whole process we have lost a lot of time, money, and tears…but other things have gotten stronger: such as our love for each other. We have made so many sacrifices these last few years. One day, it will all pay off. The one thing we can’t afford to lose is hope.

A lot can happen in 4 ½ years. Friends of ours have gotten married and had several children. We’ve watched infants grow into toddlers and into Kindergarteners. Had we been successful in our first attempts, our child would be 4 years old. He or she would be in preschool, walking and talking…being able to say “I love you mom and dad”…instead, we have an empty nursery, waiting for the day when we finally get that second line.

Facts & Stats About Infertility

Below are some facts and stats about infertility and why infertility should be covered in the state of Minnesota We hope that you find these facts useful to gain an understanding of infertility.

Facts and Stats;
• Infertility is a medically recognized disease that affects men and women equally. It is defined as the inablity to conceive or retain a pregnancy during a one-year period (6 months for a woman 35 years of age and older).

• According to the CDC, there were 7.3 million people diagnosed as infertile in 2002. That number represents one in eight couples of childbearing age. This number shows a 20% increase since the last count of 6.1 million in 1995.

• Infertility strikes men and women equally: 35% men, 35% women 20% both and 10% unexplained.

• The fastest growing group of people afflicted by infertility are women under the age of 25.

• Infertility, when treated correctly, has one of the highest rates of success of any disease -more than 80% of couples who complete treatment will succeed in having a biological child.

• A recent survey (Mercer- 2006) found that 20 percent of employers nationwide cover in vitro fertilization and approximately 37 percent cover drug therapy for infertility treatment.

The arguments for insurance coverage;
• Often patients select treatment based on what is covered by their insurance plan rather than what is most appropriate. A woman who can't conceive because of blocked fallopian tubes may undergo tubal surgery (a covered treatment that costs $8,000- $13,000 per surgery). She may be forced to forgo in-vitro fertilization (IVF) because it is not covered, although it costs about the same as tubal surgery and statistically is more likely to result in a successful pregnancy.

• According to William M. Mercer, "The decline in use of high-cost procedures like tubal surgery would likely offset the cost to include IVF as a benefit and provide improved health outcomes." According to The Hidden Costs of Infertility Treatment in Employee Health Benefits Plans (Blackwell, Richard E. and the William Mercer Actuarial Team, 2000), insurance premiums that now indirectly provide coverage for "hidden" infertility benefits (i.e. surgeries to remove scarring in a woman's fallopian tubes or varicose vein removal for men) were calculated to be adequate to cover more effective and often less expensive treatments such as ovulation induction, intrauterine insemination and in vitro fertilization.

• In states with mandated infertility insurance, the rate of multiple births is lower than in states without coverage. (New England Journal of Medicine, "Insurance Coverage and Outcomes of In Vitro Fertilization," August 2002). Couples with insurance coverage are free to make more appropriate decisions with their physicians based on medical necessity rather than financial considerations which often result in multiple births and a high rate of complications during and post-pregnancy.

• Lower multiple birth rates translate to cost savings for insurance companies.

• Infertility exacts an enormous toll on affected individuals and on society. Couples in their most active years are distracted by the financial, physical, social and emotional hardships of this disease. Infertility impacts a person's general health, marriage, job performance and social interactions—it brings a deep sense of loss, sadness and often depression.

• The depression and emotional distress associated with infertility and its challenges have been clinically demonstrated to be equal to the psychological suffering of cancer patients.

• According to a 2003 Harris Interactive Poll, 80% of the general population believes infertility treatment should be covered by insurance. (Harris Interactive Inc., Survey, 2003).• In vitro fertilization accounts for less than 3% of infertility services. According to the American Society of Reproductive Medicine (ASRM), 85%-90% of infertility cases can be treated with conventional medications. (ASRM website, Quick Facts About Infertility

Infertility Coverage Forums

FAMILY, FRIENDS and NEIGHBORS Resolve Midwest region will be hosting three forums for constituents to speak to legislators about mandated coverage for infertility in the state of Minnesota.
Show your support to them and all other Minnesotans. Please come. Listen to the legislators, ask questions, share your infertility story.

Dates and locations include:
October 10, 2007 at the Minnetonka Community Center
14600 Minnetonka Blvd. Minnetonka, MN 55345
(952) 939-8390
7:00-8:30pm

October 16, 2007 at the Roseville Civic Center
2660 Civic Center Dr. Roseville, MN 55113
(651) 762-7006
7:00-8:30pm

October 24, 2007 at the Kelly Inn St. Paul
194 Marrion St. St. Paul, MN 55103
(651) 227-8711
7:00-8:30pm

WE NEED YOUR HELP AND YOUR PRESENCE IF THIS IS TO BECOME A REALITY!

Kathleen's Story

My husband Mike and I married late, I was 36. We knew we wanted 2 or 3 children and we knew that our time was limited so we started trying to have our family fairly quickly, never dreaming we'd be infertile. We are not wealthy. We are limited to the medical treatments allowed within my insurance contract. We took that information and made decisions on the treatments we would attempt based on our coverage. We started trying for a family within a year. I had 3 surgeries to clear blocked tubes, remove scar tissue and uterine fibroids. We then began treatment with oral infertility medications in January of 2004. We had no success so we began injectable medications in March of 2004. Either Mike or I would give me a shot in my abdomen every day of strong hormones to help facility follicle development and ovulation. My insurance covers monitoring and diagnosis of infertility and 6 cycles of injectable medications (per lifetime or per pregnancy, meaning if we achieved a pregnancy I could renew and get 6 more cycles. The medications are very expensive and can cost up to $4000 a month). I had two more surgeries for scar tissue and severe endometriosis. I was told I would probably not conceive on my own and I should call an IVF clinic. While we were waiting for an appointment, we decided to continue trying with the cycles my insurance offered and pay for an IUI (intrauterine or artificial insemination) out of our own pocket (our insurance does not cover the procedure of IUI) Our insurance does not cover any services or medications leading to ART (Assisted Reproductive Technology) which is IVF (In Vitro Fertilization) and all it's treatments. We were blessed with a very rare success with this IUI and our daughter was born on May 9, 2005.

We began trying with the same treatment protocol 6 months after our daughter's birth. I had 2 more surgeries and finally had my left ovary removed. The scar tissue and cysts produced on that side were causing too many problems. The endometriosis was still everywhere, but had cleared itself from my right, and good ovary. We started injecting medications again, this time twice a day. After 3 failed cycles, with cysts developing in between cycles we tried another IUI, which we paid for out of our own pocket. That treatment was unsuccessful, so we tried again. And again. And again. By this point, our insurance decided that they were not going to cover any services relating to infertility, although my contract clearly states that I have coverage for the treatments we were attempting. Anything not covered, we paid for. The first claim was denied in September of 2006. That's almost a year ago. I turned 43 in April. Statistically, the chances for success with any fertility treatment have declined 80% in that year. We stopped treatments in December of 2006 when the stress of the insurance fight became too much and was dooming any further attempts to failure.

We have not had any treatments since then. My childbearing years are coming to an end and the insurance company has taken away almost a year of that precious time. We have had appeals, promises, denials, delays, obstructions and more appeals. They have not followed their own policies as written in my contract. We have hired an attorney who specializes in insurance and contract law. Our case is solid; we have coverage for the services we tried. We had another formal appeal before the heads of departments within the insurance company and we were promised a decision in 5 days. That was over 3 weeks ago. Just yesterday, on September 14, we received the letter stating that they will cover all past denied claims and will cover all future claims for the stated services covered under my contract, which they should have done from the very beginning. Now we have to fight to have our attorneys fee's covered. They've admitted we have coverage and those claims should have been paid. If they'd honored our contract from the beginning we wouldn't have needed to hire an attorney to protect our rights.

If we had infertility coverage that included IVF and related procedures, we would not have had a total of 10 surgeries. Those surgeries, with the exception of 2 would have been unnecessary. We would have moved onto IVF immediately. I had yet another surgery 2 weeks ago. While we know there is no guarantee that we would have been successful with IVF, our chances of success are much much greater than with the treatments I was doing. The costs would have been much less, both for the insurance company and for us (and all policy holders in general). The stress would have been greatly reduced, helping facilitate success. Mike and I have been trying to build our family for 6 years. We have a total of 63 disappointments and failures. Every month that goes by is yet another reminder of how painful this journey is.

We know that we are truly blessed with our daughter. While our dream was to have a family with 3 children, we love her dearly and will be thrilled with her whether we are successful in providing her a sibling or not.

My story is not uncommon. In fact, my story is less painful than many couples that have faced repeated miscarriages, infant loss and other devastating results. Our stories are all different. Our pain is the same. There are 15 states that have mandated insurance coverage for infertility. Studies among those states show that mandated coverage actually reduces health care premiums. Insurance costs are reduced. The number of high order multiple pregnancies is reduced and there are healthier pregnancies and babies as a result. Couples can get the health care they need and not go through unnecessary procedures with lower success rates.

Welcome

Welcome to Our Hope Minnesota. Currently Minnesota does not have manadated infertility coverage. 15 states are ahead of Minnesota in mandating that some form of infertility coverage be included in health plans.

With over 100,000 Minnesotans facing infertility issues and the desire to start families, we believe that Minnesota is facing a health crisis that needs to be addressed.

In the coming weeks and months we will be sharing our stories with you and hope that you will share yours. We will also provide you with resources, articles and studies that can help you understand infertility better.

We hope that you will become advocates in our desire to legislate for mandated infertility coverage in Minnesota. We hope that you will contact your Minnesota State Representative and Senator and express your support for mandated coverage.

Quick Facts:
IUI (Intrauterine Insemination) can cost up to $1,500 per cycle if the patient is not covered. Many people have 6 rounds of IUI.

IVF can cost up to $15,000 (plus drug costs) per cycle. Many people have 3 cycles of IVF.

The emotional pain suffered by patients who are experiencing infertility can be as intense or greater then those who suffer from cancer.

Our Hope Minnesota believes that all Minnesotans have the right to start families and that there shouldn't be a financial burden to do so.