My living daughter’s birthday is a time of great excitement and celebration. Sadly, my own family outside of my husband and daughter is not so loving. They are outright, emotional cruel. So, yesterday, my heart broke again. Nothing makes me prouder than my living daughter. For me, her birthday is a symbol. I can’t stand my own birthday. I have no idea what miracle occurred to bring her life to the universe. You would think at 40 years old, I would know enough not to take it to heart, when my family once again says we aren’t coming. Last night, my mind was so angry. I tossed and turned.
My life was changed forever as a teenager. I told the family secrets to a few friends. They took me to Alateen. When you look at resilient people, you will find through research that people need supports to bounce back from trauma. These people are lifelines. Supportive people are the strength and courage to tell the individual what is happening is wrong. So, my heart is grateful to my Alateen sponsors, the other kids, teachers, my mother and my paternal grandparents. The love they gave me reaffirmed there was more to life.
I was looking at all the pictures of our living daughter from being a newborn to now. I was crying with tears of joy and gratitude for her life. As a teen ager, I was going to college, getting career and having a family. I was going to change the world. Then, our family buried my first daughter.
I had no reason to think I was infertile. First cycle, it didn’t happen. I brought an ovulation test and boom we were pregnant. Laughing! I didn’t know what ovulation was back then. I told the whole world! Just 29 years old, it was like boarding the Titanic. Our baby had multiple birth defects. They thought the baby would be born still. My husband and I prayed. I prayed on the way to work, meetings and with my husband. Sadly, our first daughter struggled to stay alive for 33 hours. She was in so much pain. With a sad heart, we decided to end life support. My husband and I wrapped our arms around her and she died within an hour and a half. My shoes were lost in her birthing process. I was wheeled out in February with just form slippers from the hospital to get home.
My family did not support my decision to bring her life into the world. We kept trying to get pregnant after genetic counseling. It was not happening. So, I sought an RE and I had a normal fertility assessment. On December 1st, I was late. I refused to use pregnancy test until this point, but the indicators were there. I am laughing here. I brought a pregnancy test and found out I was pregnant in a public restroom. My mother-in-law and I wrapped the test as an early birthday present for my husband. This is our living daughter. It was a very anxious pregnancy. The genetic counseling at this time said our first daughter had died from a fluke of nature disorder. My family showed up to the maternity ward, when my daughter was born healthy. Thankfully, I had my husband, church and a few internet friends to get through the pregnancy?
Funny side story, I was shaking and crying during the second trimester ultra sound. The doctor came in and began to tell me the baby looked normal. At the end, I realized I didn’t ask for a picture. The doctor was looking at the ultra sound screen and he began to laugh. My living daughter was waving her hand as if to say goodbye at the end. She was an intelligent kid even in utero. I don’t know what moon dust or miracle she is from but she is an awesome kid!
My family just showed up at the maternity ward without months of communication. There was strong disagreement about her being raised to know she had an older sister. My family did their usual seize and control routine through doctors or talking with my husband. It got to the point, I removed a couple doctors from caring for our family and daughter. I looked at that little face and I ended it with my family. She wasn’t going to endure being told that she was not important.
When she was eleven months, we decided to try again. At 6 weeks of pregnancy, my daughter was napping. Her glass cross fell off the wall and shattered. I discovered that day I was bleeding. I naturally miscarried. We waited and tried again. I got through 12 weeks. Whew! One of the early ultra sounds, they thought they were two. At 16 weeks, I was carrying a healthy baby. At 18 weeks, the baby had no heart beat. There were placenta problems and the cord was too long. There were indications of a possible blood clot. The pathologist questioned if there was disappearing twin due to the test results.
So, we went to the RE where I had the fertility testing. All recurrent pregnancy loss testing was normal. I was put on blood thinners as a trial. I graduated from the beta tests with flying colors. RE handed my care to the OB GYN. So a few days before Christmas at 13 weeks of pregnancy, the baby had no heart beat. At this point, I stopped telling the family when I was pregnant. I had a D&E. When my living daughter napped, I would cry. At this point, I did not tell others that we miscarried again. I kept it quiet. I would secretly cry, when others weren’t around.
God has a strange sense of humor. So, shortly after Christmas and the D&E, I was cleaning the snow my car off. This was during the time a lot of house loans were going bad. The economy had turned. I am crying about my loss and getting ready for work. I hear this meowing. I found this little kitten. So, I figured it got out of the house and someone will be looking for it. I’ll show this precious kitten to my husband to cheer him up. We tried to find the family. A neighbor identified the cat as a stray. Okay, we will just keep it until we find a home. He was really sick due to an abscess. His birthday date was estimated around one of my due dates from a miscarriage. We kept the cat and named him Raven. Raven is now 7 years old and we are his family. My living daughter, who was 2 years old at the time told me, “my cat!”
For eighteen months, no pregnancy. Back to the RE’s, more fertility assessments and genetic consults. I had an infection. My husband’s results showed male infertility. The answer was IVF with ICIS. When they shoot the sperm into an egg in a lab. We live in a mandatory state for fertility insurance. The pharmacy coverage was from another state without mandatory fertility insurance. They refused to pay for the medication.
I was working part time on weekends and my husband worked during the week so someone was home with our daughter. We couldn’t afford the cost of the meds. So, with a heavy heart, I decided to return to work full time and enroll our living daughter in daycare. She was three years old.
So, we saved and saved. Finally, we got enough money for the ICIS IVF medications. The cycle was going well. We were all positive. It was a negative pregnancy test. My RE encouraged us to keep trying between cycles. That’s when we got pregnant with our last daughter. Sadly, she had multiple birth defects from the same rare disease. They lost her heartbeat a week before Thanksgiving. Our care went to a geneticist. We were being told that we may never know the cause. Part of the genetic test was lost. We were told the doctors didn’t understand the reason the rare disease happen again. We were going to try a different approach. I was diagnosis with breast cancer.
We were told that we may never know the cause of our children’s deaths. I was told about my options for fertility preservation, which was not covered by insurance. I read and read. My medical oncologist was willing to try to put me into medical menopause to see if it would protect my ovaries from the effects of chemo. We knew it was experimental, but we couldn’t afford the other options. Two weeks into chemo, it was discovered that our family broke medical history. Unknown to us, one of us were carrying the gene for the rare disease. There were ways to have a baby, but I did not go through a stimulation cycle to preserve fertility.
The first year out of cancer treatment, no one would put in fertility treatment. Two years later, we tried IUIs without success. My periods came back. I found the cycles shorter. I most likely would have not known before hand, except remember I was charting my fertility cycle before cancer treatment. Enough time had passed and we started IVF. The difference was noticeable. Before chemo, I had 13 mature eggs. Now, I had 5 mature eggs with one embryo transfers. The quality was poor. Last year, our RE talked to us about egg donation. As I have said before no one could have predicted our family would break medical history. I tried all types of supplements to make those eggs better, acupuncture and stress tapes. I turned 40 last year. My old RE said this is a matter of age. Chemo added insult to injury. I cried hard and started looking into embryo donation and egg donation. Embryo donation makes sense to us, because either of us can genetically parent another child.
A person asked about adoption to me again recently. We don’t want to go this route for personal reasons. We looked into it. We talked about it. It is not the route for us. Someday, when I retire, I want to become a foster parent. It wasn’t the road we want now.
Last night, I decided to tell an old friend the truth about the route we chose Please pray because one of most dearest friends in the world, I sent her an email explaining we were going embryo donation. I don’t know if she is going to accept this. She had adopted her daughter in the 90’s and it was an amazing journey. I am afraid she may never speak to me ever again. Infertility treatment is always changing with options. Someday, our story may have been different if it happened 20 years in the future.
I remain in contact with the rare disease community. When I was diagnosed with breast cancer, I made a vow to my daughters who died to become a social advocate for the advancement of treatment of all rare diseases. As time is going on, we know we are not the only ones carrying this disorder dominantly. I don’t wish this on anyone. There is a peace to knowing we aren’t the ONLY ONES. Infertility is an isolating disease. Rare disease can be an isolating disease. Being diagnosed with breast cancer before age 40 years old can be an isolating disease. I am excited about flying out to have the transfer in September. Excited and anxious!