An Open Letter to INCIID about the IVF Scholarship
My name is Karmann and my husband’s name is Ryan. Please let us share our journey through our video
We were married May 2003, and I got pregnant for the first time in April of 2004, but miscarried shortly after. The only indication that I was pregnant was a faint pink line on the pregnancy test.
We were sad but trusted that if it wasn’t meant to be, then it wasn’t meant to be, so we waited six months and started trying again in October 2004. I didn’t get pregnant again till July 2007 and again I got my faint pink line, but by the time 5 weeks came along, I miscarried yet again.
We were living in Las Vegas at the time and my doctor told us to go ahead and try again. The following month we got pregnant again, but we had the same ending. It was a lot to handle and I get so emotionally involved, so we decided to take another break. A month later we found out we would be moving to Phoenix Arizona, so we decided to wait to try again till we were settled and had insurance there.
In August of 2008, I started seeing a new doctor and started down the path all over again. The doctors weren’t concerned with my history since I “only had three miscarriages” so I trusted their opinion. At the same time, I started doing acupuncture and anything else that I thought could help my body. In February of 2009, I got pregnant for the fourth time and miscarried yet again at 5 weeks.
My regular OB at that time advised me to see a Fertility Specialist. I, on the other hand, was in denial that there was a “problem” with me! I didn’t want to believe or admit that I needed help, so I filed the information away and we decided to just try again on our own.
Over the next six months, we experienced three more pregnancies that ended with the same result – miscarriage at five weeks. I finally broke down in tears and made the call to the Fertility doctor. She ran all the tests that were needed and all came back normal. It was so frustrating because everything ALWAYS came back normal!!! The obvious question in our minds was how the results could be normal if I kept miscarrying?
The fertility doctor’s advice to us was to do IUI. My husband was reluctant since he didn’t feel that the problem was fixed, but because he had a wife who would do anything to try to make it work, he agreed. Insurance had covered a few of the fertility tests but covered nothing when it came to IUI. We used our savings and paid $3,500 dollars to do the first IUI. We again got pregnant and YET AGAIN experienced the same result – the eighth time!
The fertility doctor then advised me to have a Laparoscopy to find out if I had endometriosis. I again was willing to do anything to figure out what was wrong. She submitted a pre-authorization to my insurance company and they denied it. After sitting down with her, she told us our only option was to do IVF and asked how we preferred to pay the $10,000. My husband responded, ” We have already given you $6,000 out of our pocket and you haven’t even identified the problem, so why would we do IVF?” She told us that that was our next and only option, and again asked how we preferred to pay for it. My husband thanked her for her time, grabbed my hand, and walked me out of the office – never to return. I bawled and bawled and bawled all the way home. Even though I knew he was right, I didn’t want to stop. I was willing to do anything for the chance of having a baby. I wanted to be a mom more than anything in the world! The date was September 10, 2009.
After talking things through, we decided to take a break. I was emotionally beat and felt dead inside. Shortly after this, we decided to pursue an opportunity that would require relocating to Seattle Washington. In January of 2010 just before we moved, an opportunity to adopt came up. A 20-year-old woman from my home area was pregnant and was planning to put her baby up for adoption. We worked our tails off to get the necessary paperwork in line. The birth mother was in contact with us almost every week and made us feel like she had chosen us. Then, at the end of February, I got a call on the way home from work. I knew what she was going to say before I even answered the phone. She told me that she had chosen another family and she felt that the baby wasn’t meant to be ours. With tears streaming down my face, I told her that I understood. Yet again, we were so close to being parents, only to have it ripped from our grasp.
We continued on with faith and hope that one day it would all work out. It had to! Shortly afterward, I found out that I had Celiac Disease and decided to switch immediately to a gluten-free diet. I did extensive research and found so many correlations between gluten and infertility; I was convinced that this must be the answer to my issues.
I had to wait a while for my insurance to become effective, so I wasn’t able to see a doctor until September of 2010. By that time it had been a year since we had seen a doctor and 8 months since I had gone Gluten Free. My mother-in-law referred me to a wonderful doctor that she had used when she was really sick with her 5th baby. This doctor was amazing. She looked over my medical records and told me that I had already done all the tests that needed to be done. She then asked me why was I doing IUI and IVF if I could get pregnant? I told her that I didn’t know.
She then told me that her daughter was working with a doctor in Dallas who had tested her for Natural Killer cells. The doctor happened to be a close colleague and friend of hers and she told me that she would get the necessary information and have me tested. In November 2010 – the night before Thanksgiving – she called in tears to tell me that we had found answers! Not only do I have activated Natural Killer Cells, but my husband and I share 2 DQ-ALPHA genotypes. We both cried as for the first time in over 5 years of trying I finally had some answers as to WHY!!!!
I spoke with the consulting doctor on Dec. 6 2010 over the phone and it was wonderful to hear that there were answers and a systematic way to address things! Since there was no one in Seattle who practiced this type of immunological fertility treatment, we arranged for the treatment regimen with intralipid infusions at home. In March of 2011 I did my first round of fertility drugs. I had a perfect lining, great eggs, and did the intralipid infusion. But my period came and I was not pregnant. She couldn’t understand. I told her it was ok and just not meant to be. She wanted to try again, but my husband and I felt very strongly that we needed to move back to Las Vegas, so we returned in June.
Once again, we waited for insurance coverage to start and in November of 2011, I met with a regular OB (since my insurance required a referral to see a specialist). I endured yet again the same puzzled reaction from the doctors, who weren’t sure what to do with me. In February of 2012, my doctor referred me to one of the fertility clinics in Las Vegas. I went there with high hopes, but left in tears after being told that Natural Killer Cells were not real and that was not my problem. I knew and felt in my heart that it was my problem, and was bound and determined to find someone in Las Vegas who would BELIEVE me and want to HELP me!
The next morning, I took my 250+ pages of medical records to the Sher Institute in Las Vegas. I approached the receptionist with tears running down my face and asked her if Dr. Sher believed in Natural Killer Cells and could he help a girl who had endured 8 miscarriages? She smiled and gave me a tissue to wipe my tears and told me that I had come to the right place. She assured me that Dr. Sher did know about Natural Killer Cells and that yes, he could help me. She then told me that coincidentally, he had cancelation that afternoon and if I could come back, I could see him that day! My heart leapt and an overwhelming feeling came over me that I had been led to him and it would be here at Sher Institute that all my questions would be answered.
I met with Dr. Sher that afternoon, and after I told him that I had had 8 miscarriages – all at 5 weeks – he didn’t even have to read over my medical records to know that I had Natural Killer Cells and matching DQ-alpha genotypes. He then asked how long it had been since I had gotten pregnant. I told him almost three years. He then proceeded to tell me why. I starting crying, because this was the first time that I had an answer to that question. He explained that my body no longer allowed me to get pregnant. He sat with me for more than an hour and half, and answered everything for me. I left feeling so validated, so loved, and so excited that there was HOPE and there was a WAY to be a mom.
However, the way to go about it was overwhelming since the BEST option would be IVF and we didn’t have the means or insurance to cover it. I was sold and ready to do whatever was needed, but my husband, being the more rational thinker in the relationship, had a harder time working through the cost and low odds of success.
I gave him time to process the whole situation and it wasn’t until June of 2012 that we stepped back into Dr. Sher’s office to talk about things all over again. Our insurance covered 7 IUI’s so we went back hoping we could do that first before going to the IVF. Dr. Sher went over the reality of that and assured us that he would support whatever decision we made, but reiterated that the BEST way would be IVF.
He then told us about the INCIID IVF Scholarship program and we submitted our application as soon as we could. We were selected for the scholarship. Part of INCIID’s program is helping them raise awareness and fund raising. We helped INCIID raise $3500 dollars through a Dessert Event. We had our friends and family came from all over to donate to help us reach our goal of $3500 dollars. We had an amazing turn out and thanks to the event and those who sent money from all over we raised $5200 dollars for INCIID. In October 2012 we were beyond elated when we found out that we had been awarded a scholarship for free IVF treatment and matched with Dr. Sher, who donates several cycles a year to the INCIID program. I got pregnant, but my 2nd beta did not progress quickly enough, and the pregnancy did not go forward. Dr. Sher was certain that it was not the Natural Killer Cell problem, and wanted to change the dose of medications to try to improve my egg quality.
I cycled again in March of 2013 with the different medication protocol, and we ended up with 7 grade 1 embryos. We transferred one embryo and had six left to freeze. After 8 1/2 years of trying, 9 miscarriages, and going from doctor to doctor, we found our Angel here on earth!!! Dr. Sher has changed our lives forever! It has been a long and hard road but having it end with the Sher Institute was PERFECT!!!! Even though I got pregnant the road to have a healthy baby was still a long ways out. I had to do interlipid infusions every 2 weeks till 28 weeks gestation. I had an emergency cerclage put in at 14 weeks as our little one was trying to come too early. My high risk doctor told me that he watches his IVF patient’s cervix very carefully since he has noticed a trend of the cervix opening due to the IVF procedures. How thankful we were for him! I also have the blood clotting disorder so I was on Lovenox up to 6 weeks postpartum. I had to be induced and it was a 26 hour labor. It was intense and long but our little baby’s heart rate never wavered.
We didn’t know what we were having. We wanted it to be a surprise! Hearing my husband tell me, “it’s a boy” will be a moment I will remember forever! Karl Kai was born November 21st, 2013. We named him Karl after his dad, grandfather, and great grandfather but he goes by Kai. Kai means: ocean, strong, unbreakable, and triumphant! Kai is all of those and more! He just turned 1 a few weeks ago! He is the light of our life! He is our miracle!!! He is such a happy boy! This past year has been nothing but amazing! Being parents has been the hardest, greatest, most rewarding job! He has taught us so much and we are better people because of him!
I love being a mom! It is everything and more than I could have ever imagined. I have tried to share our story to as many people that I can! I want others to know that there is ALWAYS Hope! We would NEVER have been parents and allowed this joy if we hadn’t been given the IVF scholarship from INCIID!!! Our insurance would not cover it and we would NEVER have been able to afford it! Our situation with the Auto Immune Disorder is becoming more and more common. It is becoming the answer for some couples that used to be called, “unexplained fertility”. With this Auto Immune Disorder the BEST option is IVF. My prayer is that there can be a way for IVF to be covered so more couples, who are in my situation where IVF is their only answer, that they too can have that chance to become parents! We are eternally grateful. We owe everything to INCIID and Dr. Sher! We would not be parents if it wasn’t for them. We would not have this sweet, happy, adorable little miracle in our lives!
Karmann, Ryan, and Kai