Conceiving A Battle
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Stetson was only in our lives for 5 weeks. 5 weeks was all the time I got with my baby. Although he was here for such a short time, he is thought about everyday and talked about almost just as much. He forever changed our lives. I desperately wish he was here. Sometimes I still wonder if this is truly the reality I live. I still wish his life was different, that there is something that I could have done to change his story. But here I am! This is my reality, nothing can be done.
I’m still struggling with how we want to grow our family. I feel such a desire to grow our family and when I feel like maybe I’m getting closer to knowing what path to take I find myself feeling so much anger and so much hate.
I met with my regular OB doctor and she encouraged me to try to meet with a doctor at the IVF clinic here in Idaho. I told her that our first experience wasn’t very good, at least for me. However, Levi and I still really want to have more biological children. So much so that we have contemplated rolling the dice but then we can’t bring ourselves to pull that trigger. She voiced that a 25% risk of a terminally ill baby is pretty high and she wouldn’t encourage us to go that route. I agreed to meet with the other doctor.
Surprisingly we were able to make an appointment quickly. I had my doctor fax our genetic information to the IVF clinic and began thinking about how to prepare for the appointment so hopefully it would go better than the last time.
Before the appointment Levi and I talked about the financial aspect of IVF. We think we are looking at a minimum of $30,000 but that can potentially become much higher depending on the cost of our genetic probe and if we have a failed transfer or we don’t have healthy embryos etc. Levi and I don’t have anywhere near that amount of money to put into IVF. Making this desire seemingly unreachable.
After multiple conversations with Levi I discovered that he wasn’t willing to take out a loan to do IVF. He is hoping that we could apply for grants and find creative ways to earn money to fund our IVF journey. While I admire his ambition, I know it is naive to think that we could get IVF funded in its entirety.
I absolutely agree that we should appeal to our insurance, apply for grants, and find creative ways to raise the funds. However, I know the likelihood of having all of it funded (in the desired time frame) 100% is slim.
Our financial concerns and our desire to grow our family clashed and I found myself in a slight battle with my husband and my anger towards God increased. I wanted my life to change. I wanted this awful genetic disease to be cleansed from our DNA. I spent several moments crying, screaming on the floor just in despair over the genetic imperfections our bodies create. If God is there then I wanted to make sure he heard me. There have only been a few times throughout our journey that I found myself on my knees in anguish screaming, pleading and I must admit swearing at God for the pain I believe is caused by him, and this was one of those times.
When Levi came home from work I told him I wanted to cancel the appointment. What would the point be if we couldn’t agree to how we were going to fund IVF in the first place.
Levi gently further explained to me the financial concern he has. He said even if we got a loan we have to be sure we can make the monthly payment to pay it off. He also wanted me to know that our other dreams of a house, vacations, possible family experiences would be on hold and very limited. I then got the chance to explain to Levi that waiting to have the ability to pay for IVF in full, will take years and I don’t want a bigger age gap between Georgi and her other siblings. I don’t want to raise two separate families. I don’t want Georgi to feel like a second mother to her sibling. I explained that my desire to have more children is now and I’m not willing to wait ten years. Not to mention that I’m 30 and have already had high-risk pregnancies, which doesn’t decrease as time goes on. I’d rather rent forever and never travel beyond our backyard if it meant that I could grow my family now.
Our lives aren’t extravagant. We work hard and we enjoy the occasional date night or local family trip. We live within our means however, that typically means there isn’t much to spare. Levi and I came to an agreement that we would do everything we could to earn/raise money for IVF and then look into loans for funding the rest. However, the financial picture wouldn’t be clear unless we went to the first appointment.
Levi and I had a better understanding of one another and I began to once again prepare for the IVF appointment.
Then Sunday came. Sundays I find myself in immense anger and I can’t help but ask “why? Why did this have to happen to me?”. I go to church with a big chip on my shoulder and I don’t know whether to punch a wall or fall down and cry. I feel bad for the members around me that have no idea why I’m so cold or why I pout in the corner. Once in relief society I shared that I had lost Stetson; I know many of the women were trying to be helpful but their silver lining comments just made everything worse. I have found myself frequently leaving class early and walking home. Levi stays and brings Georgi home once church is over. But, this Sunday I tried to push through relief society as I sat in my chair fighting back tears.
The discussion was centered around Elder Rasband's talk “The Things of My Soul”. Now I’m not so sure why this topic was so difficult for me to listen to. The first question posed was “what makes up your soul?” and of course people start making suggestions like love of family, love of the Savior, etc. and all I could think was grief, my soul is made of grief. My internal battle of despair, anger, and failing faith became the lens in which I looked through the entire lesson. The discussion went on to explore our love for God and neighbors and ourselves. Several other questions were posed and we were to share thoughts with our shoulder partners. My shoulder partner was this tiny little old lady who’s voice reminded me of Mini Mouse. I feel so bad for her, being partnered with me, it was probably unpleasant. Every question I simply shrugged or would say “I’m not sure.” Eventually fighting back tears became exhausting and I left the room and waited in the parking lot for Levi and Georgi.
I suppose the first principle of the Elder Rasband's talk is to “First Love God the Father and Jesus Christ our Savior.” I just felt so angry. Love God? Love him! the reason for my son’s death. The reason for my grief and pain and I’m supposed to love him? No! No, I hate him! I am not feeling the love of God. Battling through the difficulties of growing our family all the while carrying my grief for Stetson is taxing. All at the same time I am struggling to love God and know he loves me. However, despite my internal struggle with my faith I want to grow my family and that is currently my main focus.
I began to create a list of questions to ask the doctor. For the sake of sparing you from the boredom of trying to clumsily write how IVF generally works I’d encourage you to watch this video. Just ignore the strange commentary in the beginning of the video and conclusion. The IVF process in the video is a pretty good depiction of how doctors have explained it to me. It will also help with understanding some of my concerns with the process.
I was nervous to meet with Dr. C but she was friendly and a lot more empathetic to our special circumstances. She painted a more realistic picture of IVF statistics and our odds of becoming pregnant through this process.
The first step is to run a series of blood tests. This will include a more extensive look into our genetic code. We also will undergo a recessive gene screening to ensure galactosialidosis is the only genetic disease we have to eliminate. Next I will have an ultrasound to investigate the amount/health of my follicles. Once these steps are done, the genetic team will have a clear picture of our genes and they can build a probe to genetically test our embryos for our specific genetic variants.
This is mind blowing to me, that a group of mad scientists can Frankenstein their way to creating a probe to test for this genetic disease. It’s amazing to think about all the technological advancements and what can be accomplished today. However, even with such advancements there are limits and not all things are possible.
Unfortunately my doctor couldn’t give me an exact timeline or guarantee that the probe would even work. This is something that our genetic team will have to conclude. Although we are certain of Stetson's diagnosis, the recessive genes that Levi and I carry are a bit more complicated.
Levi’s gene variant is documented in medical literature and databases. However, my gene variant is unknown and as the report says “This variant has not been reported in medical literature or databases.” However, at the time our genetic team felt confident in concluding that because of the location of our gene variants in relation to the cell, galactosialidosis is a conclusive diagnosis. Not to mention Stetson's genes also confirmed this conclusion.
There is a possibility that the genetic probe needed to test our embryos, cannot duplicate my unknown atypical gene. This means “worse case” scenario only Levi’s variant will be testable. This creates a potential to possibly discard viable embryos.
I know this is a bit confusing and difficult to understand. I must admit it’s difficult to keep it all straight myself. Perhaps the visual below will help, through the use of a punnett square. I’ll use the letter “G” to indicate the recessive galactosialidosis gene. The lowercase “g” will indicate the healthy gene. Levi’s genetics will be represented in Green and I’ll be represented by Pink.
As you can see using the visual above this is why we have a 25% risk of having a terminal baby. But we also have a 50% chance of having children who are carriers of this disease. Although these children are carriers they are still completely viable babies. Georgi could be a carrier, we are just letting the decision to be tested to be hers. However, this is why I’m concerned about the probe's inability to test for my variant because then we have an increased risk of discarding not 25% of our embryos but 50%. Unfortunately, we will not know the probe's capabilities until it is built. Our doctor would not even start the egg retrieval process until the probe was complete.
Therefore, the stats of this entire process is even more challenging. Our doctor said that after an egg retrieval 60% of the eggs die before fertilization can take place. When it is time to fertilize the remaining eggs she would use the needle fertilization technique to ensure when genetic testing happens a clear genetic picture will be represented. After fertilization based on our risk statistics, 25% of embryos will be discarded due to galactosialidosis leaving me with 15% of my initial egg retrieval of healthy embryos. But if the genetic probes capabilities are limited my possible remaining embryos slip down to a very small number.
Using numbers rather than percentages may paint a better picture. Let's say my egg retrieval produces 10 eggs. 60% die leaving me with 4 eggs ready for fertilization. Then genetic testing happens to the now 4 embryos, which depending on the probe will eliminate 1 to 2 of those embryos. This is also not taking into account the possibility of other genetic diseases like trisomy 13 and 18. Genetics are insane, even without inherited traits or genes can produce errors spontaneously. My current doctor as well as the previous doctor both voiced that 1 to 2 healthy embryos are typical results. To top it all off once the embryo is ready for transfer its only a 65% chance that the pregnancy will stick.
These statistics and odds make this IVF journey increasingly difficult. Not to mention my morals and ethics are still challenged. I have tried my best to come to terms that this is really the only “safe” way to conceive a baby but I still feel angry that this is the way it needs to be done. There are so many unknowns and risks and not to mention the monetary aspect of IVF that I feel crippled by these decisions.
Some people may think the easy decision would be to adopt but this also carries many unknowns and risks. The cost is still expensive and adoption still produces challenges that are difficult to navigate. Such as how to adopt, private adoption or foster care. Also these challenges directly affect Georgi. We feel that foster care would be too difficult for Georgi and us. The goal of foster care is reunification and I wouldn’t want Gerogi or us to become attached to a child that isn’t adoptable. Many people may not know but children can be in the system for several years and never become adoptable. Also we wouldn’t want to change Georgi’s birth order as this also can cause challenges for children. It’s difficult to find a young child in foster care that is waiting for adoption rather than reunification. As a child who’s family participated in adoption through foster care I know first hand the difficulties it presents and Levi and I feel this isn’t the right path for our family.
Private adoption also produces challenges. Typically when a birth mom finds adoptable parents they cover the cost of her and the baby’s medical expenses until the baby is born. The birth mom is allotted a certain amount of time to terminate her rights. If she decides that she wants to keep her baby the adoptable parents are not refunded for the medical expenses they provided. We have the potential to be out of money and without a baby. Not to mention the emotional toll of losing a baby to someone else. Again we feel this isn’t the path for our family.
Adoption is a beautiful and wonderful thing. However, too many people think that it’s the solution for infertility or a family’s inability to conceive a baby naturally. Adoption is not free of difficulties or trails. Adoption should be met with a great deal of consideration and weighing the pros and cons and it's okay if adoption is not the path for every family. Everyone’s family is different and the lack of desire or want to adopt shouldn’t be met with shame or guilt but rather the understanding that adoption, infertility, and naturally conceiving a baby all carry their own challenges and difficulties.
Levi and I also looked into embryo adoption to eliminate the unknowns of traditional adoption but, this process is still incredibly taxing, expensive, and comes with other challenges that just don’t make sense to us. We have also ruled out sperm and egg donors. The IVF process doesn’t change a lot using donor eggs. And Levi is really uncomfortable with the idea of a sperm donor, as am I. Neither of us are comfortable with the idea of using donor “material” and therefore we decided not to explore this option any further.
When we had our IVF appointment I was nervous and excited. After the appointment I felt more confident that this was the best path for our circumstances. I felt like IVF was the best possible solution for the information and knowledge we have set before us. However, as time has passed I have become daunted by the financial and possible moral implications of discarding a potentially viable embryo.
We have a financial appointment with our clinic next week to hopefully get a better understanding of what the cost will be for one cycle of IVF and then if that fails what the other cycles will cost. Also because insurance doesn’t cover any aspect of IVF we need to know when payments are due and if we need to pay in full. Based on rough numbers we were looking at least $15,000 not including medications, the genetic probe, and genetic testing of the embryos. The genetic probe itself could cost $7,000 just to build. Again the cost of the probe we won't know until it gets built.
I told Levi that I'm becoming increasingly overwhelmed with our ability to continue with IVF. The cost alone feels unimaginable and I hate that we have to spend money on our probe to discover if it’s capable of detecting both of our genetic flaws. At first, I felt like the “worst case scenario” of only detecting Levi's variant was just the best I could do with the information I have. Although that may be the case I’m beginning to become uneasy with this possibility.
Again I find myself frustrated and angry at my situation. Why is this happening to me. Why is my desire to have children this unbelievably challenging process. Its not fair and I know life isn’t fair but there are people out in this world who literally throw their children away. Who cast them aside like they’re trash. Yet here I am just begging for a clear path to growing my family.
I know I’m fortunate to have Georgi and I am absolutely grateful for her. But I also know that my family isn’t complete. I know I have more children and I just wish my path to them was made more clear. Right now I’m learning how to juggle all my emotions and discovering I’m not very good at it.
Levi and I have switched roles. Levi is becoming more confident in our financial capabilities at least he says “I’ll find a way to make it work.” He also suggested that we don’t have to make a decision to continue with IVF until the probe is created. He explained that we can have the probe built and if the probes capabilities are only able to check for one variant then we could make a decision to move forward or not at that point. I must admit I was surprised to listen to this suggestion as it could mean we would toss $7,000 away on a genetic probe that wouldn’t be used. But Levi was confident and said that we can’t cry over money we lost. It’s a learning experience and it happens all the time and probably will happen again because sometimes that's just how life goes. It's strange how he went from feelings of not wanting to get a loan to let's just take this one step at a time. However, I’m glad of it and just pray that the probe will detect both flawed genes rather than one.
I think we have reached a point where we know we want to grow our family and we can be thankful and glad of the medical advancements that have allowed us to prevent enduring the loss of another child to galactosialidosis. As I have indicated in a previous post the decision to move forward with IVF isn’t easy and it still is a scary and daunting process. I also must admit that I still feel intense anger and just wish this wasn’t what our lives have come to. Perhaps my anger and bitterness will fade away one day. Maybe one day my faith in God will be restored and praying and attending church wont feel like a difficult task anymore.
Hopefully after the financial appointment we can have a better understanding on how to fund IVF. I also have been searching for a part time job to bring in some extra money strictly dedicated to our IVF fund. Unfortunately, that has been difficult for two reasons 1) Georgi, I can’t have a job that essentially pays for daycare, and 2) I want to ensure I’m making the best decision for Georgi emotionally and physically. Upon sending out applications and getting no leads I decided to enter into a bookkeeping program. My goal is to get the program done as fast and efficiently as possible so that I can begin to take on clients. It’s a bit of a risk but it makes the most sense. I was planning on taking bookkeeping classes just so I could do the books for Levi’s business, it's something I can do remotely, and it provides a paycheck for work I was already planning on doing. Levi also has agreed to find some side jobs he can do to help contribute more to our IVF fund. It's stressful and daunting to think about but we hope with some effort we can at least ease the financial stress that comes from IVF. I imagine there is little I can do for the emotional component of our IVF journey.
I hope that the cards will fall into place and IVF is the right path for us and we will be able to achieve having a baby once again in our home. A baby that is free of chronic pain and illness and will be able to grow up and be a sibling to Georgi. I hope that I don’t have to experience losing another one of our babies to galactosialidosis and I can view these medical advancements with gratitude and not be weighed down by unknowns or spiritual things that just haven’t been revealed.
I want people to understand that I believe life is precious and sacred. I believe with all my heart that pregnancy is a gift and something to be celebrated. I whole heartily condemn abortion and know that even terminally ill babies have a purpose. Stetson’s life was not wasted and I wouldn’t change anything that we did. If I naturally had another baby like him we would hold on to them as long as we could. I also admit that I don’t know when the spirit enters the body and I believe that technological advancements are for our good. I still believe embryos regardless if they have a spirit or not, should be handled with the utmost care and viewed as a special tabernacle for the spirit. This is why IVF is a hard emotional journey and I hope people understand that IVF with purpose to create life is different than abortion with the intent to take life. I hope that Levi and I will receive more clarity on the subject but as far as our religious views and doctrine IVF isn’t viewed as a sin nor is it condemned but one of the many subjects that God has yet to reveal to us through revelation. Perhaps as I learn to forgive God I will be able to know for myself if this is the right path. I haven’t received such clarity but have decided as of right now having our own biological children is the path we want to pursue meaning IVF or conceiving naturally are our only options.
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