I am going to write a letter of thanks to women and men, who are donors. Before I do, I am going to write a brief summary of our journey. Fourteen years ago, we decided it was time for a family. Before being pregnant, I glowed. The year before we tried, I made sure everything was done. I visited churches looking for the perfect family church. I made sure I was healthy. I brought baby items. It was time for a baby. I was so naïve at my precious age of 28. I thought couples had sex and you just got pregnant. I completely knew nothing of ovulation and timing. It was disappointing the first month, we tried. Nothing. So, I read online how to get pregnant. I got ovulation kits and within one month, boom we were pregnant. At 9 weeks, I had a threatened miscarriage. I woke up bleeding. My husband and I headed hysterical to the ER. The baby was okay. We made it to the traditional 12 week mark and made the big announcement. I say this with tears we were so innocent. At the 18 week ultra sound, we were joking around and laughing. We were play arguing about if we should learn the baby’s gender. We were so excited. The day after the ultra sound, we were heading to London for our honey moon (We couldn’t afford when we got married. Life was great!
The ultra sound tech didn’t say much. We were in a good mood. After the ultra sound, I remarked to my husband, we didn’t get a picture. The doctor called us in. I said, “we never got a picture.”
The doctor looked grim. “The baby has multiple birth defects. I don’t think the baby is going to live long enough to reach birth.” She said.
I can’t remember much after that. I remember screaming “no” like my soul was being shredded into pieces. I remember falling and the doctor catching me to make sure my head didn’t hit the counter. We were left through a back door to an immediate appointment in Boston. I couldn’t stop crying and calling people. We got the hospital and my husband had to lead me across the parking garage, because I couldn’t find the elevator. At the hospital, they asked me for my license and for several minutes, I would go into my purse and couldn’t remember what I was looking for. I begged them at the hospital to tell me that the baby just had Down Syndrome. I had an amniocentesis test. I asked them for a picture of the baby.
I came home. My husband asked if we should cancel the trip. I looked at him and said, “If the baby is to die before birth, then let’s show the baby the world.” We did go to London during the Bush demonstrations. I couldn’t talk or breath. I spent all my money (our cell phones did not work.) on the payphone trying to learn news. The stress was so high. We went to the wax museum. One of the rides took our picture. In the picture, it was a couple with broken hearts. I never brought the picture. I refused to have my picture taken the entire trip. I went to Westminster Abbey, I kneed before every statue begging for our baby’s life.
Avery was diagnosis with Campomelic Dysplasia. We went through all the trisomy diagnoses. I was born a rare disease mother. People voiced their opinions about what we should do. Our baby was becoming was becoming a symbol for others about arguments for social issues instead of our baby and our choice. She was born prematurely. Avery died a day after birth. I had never witness a human die. I felt strong guilt for agreeing to do not resuscitate orders. I never doubt there was a God. As I watched Avery struggle for each breathe. I became obsessed with is there an afterlife? I began to doubt God. Many friends ended their friendships with us. I think I hang out with a lot of emotional abusive people. My own brother screamed at me for crying because, “this was my fault for not listening to the doctors.”
I had flash backs. I finally left my job because they couldn’t get that I couldn’t be around babies. I was getting flooded with memories of my baby’s last breath. When I reached out, I was told I was doing this for attention. So on my last day of work, I did a very brave thing. Someone brought in a baby. I asked to hold it. The memories were flooding me. I held my composure. The second, I was out of their sight. I bite down on my fingers and sobbed wildly. I kept trying to get pregnant over and over. One negative pregnancy test after another. I attended every one of the recommended doctors appointments and I was assured it was a most likely a fluke of nature. Campomelic Dysplasia was usual thought of to be passed on by a parent with the condition. Since neither of us had dwarfism or seemed to have dwarfism. The other way was either my husband or I had a genetic problem with sperm or eggs. I was jobless and babyless. At times, I told my husband that I no longer wanted to work in the field that I loved. Thanksgiving day, I kneeled before Avery’s grave and begged for help. I was no longer with the children that worked with and loved. My Avery died. My uterus was empty. So, I kept applying for jobs in and outside my field. I was going to a fertility center for tests. Then, on December 1st, 2004, I learned I was pregnant. My mother-in-law and I wrapped the test as a birthday present for my husband. I started a new job. Being pregnant again was not easy. I played loud happy music to keep my anxiety down. On August 11th, 2005, our daughter Hope was born. I didn’t know if she was a boy or girl. We stopped asking the gender question and gave thanks for a healthy child.
My brother and sister disappeared from my life. They are very emotional abusive. My sister was hiding her own pregnancy. She said to me, when I upon me telling her the news of my pregnancy. “If you miscarry, I don’t want to hear of you crying. Miscarriages are away of getting rid of genetically inferior babies. We don’t want genetically inferior babies in the world.”
I learned quickly that I couldn’t continue a relationship with my siblings. It raised my anxiety. So I let them go. Weeks before Hope’s birth, they came back. I was so positive. Sadly, we hired the wrong medical team for our daughter. I did not know my brother had physically threaten one of the doctors, when his son was diagnosis with Asperger’s syndrome. This doctor was on a revenge quest. He treated me differently when I was alone. He was sickly sweet when my husband was around. It ended up being a blow up. My brother calling me all hours of the night to call me, “a liar.” I took Hope to a different doctor. Would you not know they were affiliated with that other practice. I considered walking away from my husband and child thinking I was the problem. I could go to doctor appointments alone. Finally, when Hope was about 2, I had to ask myself who was paying who with the doctors. Hope is a straight A and beautiful young lady. She has a new doctor team and there is no problems. Sadly, my niece around Hope’s age was born to my sister has several developmental delays.
I could write a book. I was so convinced our losses were over. When Hope was 11 months old, I decided to have another baby. My in-laws felt I shouldn’t try because my husband’s sister was trying to start a family. I got pregnant. One nap time, Hope’s cross fell and broke in half. I felt a strong urge to go to the bathroom. I was bleeding. I had a natural miscarriage at 6 weeks. We tried again at New Year’s time. The baby was developing normal. At the 18 weeks ultra sound, I was told the baby had no heart beat. It was my son Haven, who we could never hold. He had died silently at 16 weeks.
I began to not tell anyone. We ended back at the fertility specialist for recurrent pregnancy loss. We had another genetic consult and we were given the same information. They couldn’t find any problems. There was a fade theory about MFTHR genes causing blood clots. I went on Folic Acid and blood thinners. I had to pay an co-payment of $300 dollars for the blood thinners. We got pregnant again. It was Christmas time and at 11 weeks, I was told the ultra sound was normal. A few days before Christmas, there was no heart beat at 13 weeks. The baby was estimated to have died days after the 11 weeks ultrasound. I had a D&C two days before Christmas. We were heart broken. Everyone was celebrating the holidays, my husband and I were in tears. The doctor offices were closed.
Shortly after Christmas, I was crying and shoveling the snow off my car. I heard a kitten crying. It was 2007. Lots of people were loosing their homes. I called out to the kitten, it came to me. I showed my husband. We agreed to try to locate the owners later. My neighbor informed us that the cat was abandoned due to a foreclosure. We agreed to give the cat a home until an adoptive family could be found. The cat had a huge abscess on his neck. New Year’s Eve, I found myself in a vet clinic getting this poor animal help. I explained we were considering adopting a child and we would care for the cat until a new home could be found. I spent my New Year’s playing nurse with this cat, who was recovering from surgery. Strangely enough, the kitten was born around the time, my son, who I lost at 18 weeks, should have been born. My energy went into finding the cat a home. A manger at the pet store agreed to adopt the cat. I was explaining to my 2 years old that the kitten found a home. She looked at me and said, “my cat!”
I called the manager at the pet store and apologized. We kept the cat. He was an all black cat with a white heart on his chest. My baby’s name was Haven, who died at 18 weeks. For weeks, we didn’t know if it was a boy or a girl. I named him Haven because it was a unisex name. I thought of him safely with his sister. We named the cat Raven, who by the way absolutely flies through the house to snuggle me. He is all muscle. When he jumps on your lap, it’s like when Tigger pounces in Winnie the Pooh. Trust me, he loves to walk all over you.
For months, I couldn’t get pregnant again. My husband’s sperm count and quality was low. We were told we need IVF-ICIS. (They shoot the sperm into an egg.) The year was 2009, it was tough financial times. My husband’s bank was sold. The health insurance covered IVF because it was in a mandatory state for infertility coverage. However, the pharmacy insurance came from a state without coverage. It was getting hard to have childcare for Hope for doctor appointments. I decided to return to work full time, because we needed to pay for the medication out of pocket. I felt it would be quick and I would have another baby. So, we finally paid $3000 for the medication through taxes. Everything look so positive. I ended up not pregnant. I didn’t even have enough meds for another cycle. My husband sperm count returned to normal. I was crying so hard. Months of work for no baby. We began to try again on our own.
On our 10th wedding anniversary, I was very upset and angry. I learned I was pregnant again. I was terrified. All the tests were normal. At the 18 weeks ultra sound, a resident told me she needed the doctor to sign off on her work. The doctor returned and told us that the baby had multiple birth defects. The night mare happened again. We had after years of genetic tests, conceived another baby with Campomelic Dysplasia named Addison. I rented in this pregnancy a dropper. One morning, there was no heart beat. I was induced the week before Thanksgiving. I lost my job later that year. Lucky for me, a previous employer hired me. Avery’s blood in 2004 was flown to Germany to confirm her diagnosis. The United States had open a lab.
The geneticist recommended we both get tested. My test was negative. It was thought that two recessive genes could cause Campomelic Dysplasia. We decided to start trying in-home inseminations with donor sperm. At this time, our health insurance was in another state without mandatory coverage. We tried one cycle. I began to notice blood on my bra. I thought a milk duct infection due to Addison’s still birth.
The doctors discovered a lump in my breast. It became clear that there was a great chance of breast cancer. The Friday before Memorial Day, I was told I had breast cancer. No insurance will cover the cost of fertility preservation. Since it also could have been one of us making our eggs or sperm wrong, which is impossible to test for, I chose to pay for fertility preservation. My husband’s blood work was lost. On the day I had my lymph nodes removed for breast cancer, he had his blood drawn. I started chemo. The doctors agreed to let me try to use Lupron to save my ovaries. It put me into medical menopause. I had chemo and medical menopause. I was able to work full time mostly. Two weeks after chemo was started, the test results came back. We were the first case in the world to be documented with one genetic carrier. I could have used my eggs. It was too late.
My mother died half way into chemo from natural causes. I found her dead. I brought a bib that said my mother is a breast cancer survivor. I wanted to hold on to my dream of another baby. In 10 months, I lost my baby, got diagnosis with breast cancer and lost my mother. I would bring the bib to every cancer treatment. I would cry into the bib. Somehow someway, I was going to be a mother. My relationship with my in-laws fell apart. My sister-in-law declined my offer to be a surrogate mother, which I understood. During Hope’s 5th birthday party, I learned she had a baby named Maddison. The names sound so similar. After breast cancer treatment, I began to have anxiety attacks. The thought would just enter my head, my daughter died. I also had flash backs of Addison’s death and my mother’s death. An old obsession resurfaced. Is there a God and afterlife. Six months later, I tried to go back to fertility treatment. I was told to wait for a year.
I started buying donor sperm through a bank and tried to inseminate myself at home. Finally enough time elapsed, so I could return to fertility treatment. The two IUI’s failed. We tried 3 rounds of IVF. My husband only accepted job offers with companies who we checked out their health insurance. In March 2014, I failed my last IVF cycle with my eggs and donor sperm. We had been looking into all options for egg donation. Please note either egg or sperm donation is covered in any state. I started looking into options out of state. In my home state, it was $50,000. I found an embryo donation program on the west coast that combined donor egg and donor sperm for embryo donation. Please note this is not left over IVF embryos. I began to fly out. I had to keep everything hush, hush. It was rumored that I was moving to the West Coast by friends and family.
The first cycle failed. I tried a fresh cycle, which wasn’t easy. IVF is hard for us. We have to come up with excuses. It was really hard to explain why I had to just pack up and fly out. On August 25, 2015, I had gave birth to my daughter Joy. She is a beautiful classic toddler. Infertility was 13 years of my life. I don’t miss the silent tears of a failed cycle. I don’t miss googling if standing on my head will make me pregnant. I don’t miss trying to stand on my head.
I stayed in the field that I loved. I was able to return to working with children. I have a specialization in substance abuse counseling. My job is mom first. I have been able to find jobs to work around my children’s schedules.
I don’t forgot my journey. I try to be available to other families with rare diseases. I tell my story. Not for pity. I tell my story in the hopes of someday, we find more cures for breast cancer, infertility and rare disease. I want there to be a day that I hear Ms. C, Avery and Addison would have had better quality of life if they lived now. I don’t want other couples to be the first in the world. I am mostly agnostic now. I have trying to catch up on building friendships and making my own family. I accept my family and in-laws as they are. I also believe I am the captain of my soul. I made a promise to God that I would use my breast cancer status to improve life for those with infertility and rare disease. I also try to advocate for cancer patients. Most of all, I am mom first.
ellynhopes's Blog 